Category: Dementia

Introduction

Dementia was an illness which consisted of a group of symptoms characterized by reduction in memory, impairment in the reasoning skills and slow decline of skills required for daily living. Changes in the brain, both structural and biochemical, caused these illnesses. The condition was defined as a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment (WHO, 2007). Dementia was a disability which could occur at any age but affected mostly the elderly beyond 60 years.

The Aging, Demographics, and Memory Study (ADAMS) indicated that dementia in some form was found in 3.8 million of people in the US (Plassman, 2007). Older populations which were progressively becoming larger were bound to have more dementias (Shagam, 2009). Of the people older than 71years, the incidence was 14% of the population of 35 million. By 2030 the population was expected to double to 70 million. This would warrant the effective management of dementia for socioeconomic reasons (Anderson, 2007). Annual global costs of management of dementia reached to more than $315 billion (Shagam, 2009).

The US alone incurred costs of $100 billion (Worldwide cost, 2007). Despite all the efforts to provide care and the large amount of costs of treatment, the plight of the dementia patients was still not any better. The quality of life was something to be immediately put right. Dementia affected the family care-givers extending their stress in managing a job and caring for the dementia patient together. The intense pressures led to fatigue, depression and chronic illness.

The chances of care-givers dying earlier than people who were not care-givers were 63% greater (Schulz, 1999). A few varieties of dementia had been recognized. These included Alzheimers disease, vascular dementia, fronto-temporal dementia and dementia with Lewy bodies (Shagam, 2009). Primary care and community care were recommended (Congden, 2007). The hypothesis concerns how the quality of life of patients with dementia could be improved.

Statement of the problem

The memory loss, deficits in executive functioning and a lesser cognitive functioning caused the persons with dementia to lack competence and be unable to manage their affairs (Shagam, 2009). The quality of life they had in their aging days was miserable and demanded a drastic change. Dementia was neither preventable nor curable and could not be delayed. The sharp rise of the population with dementia had become a reality with shocking statistics.

The helplessness of these people had stimulated me to do something in favor of them. This study will be in search of methods to ensure that the aged with dementia were recognized sufficiently early, and provided ample opportunity to be cared for by the community, be it family members or professional carers or the community in the neighborhood so that the expected poor quality of life was reduced. The failure of diagnosis was never to be the reason that they went without assistance or care. Each patient had the right to live a good quality life just as others. Let us make them happy by caring for them as our own. This writer will be focusing on finding ways to improve the quality of life for the elderly with dementia through a search of relevant literature.

Prevalence

The prevalence of dementia in the US has been depicted in Chart 1 on the next page. It shows very obviously the prevalence in the older age groups (Plassman, 2007). The prevalence in the European countries was assessed from a population study in 1990, the EURODEM (Alzheimers disease International, 2008). According to Luengo Fernandez, UK has 820000 people with dementia (2010). The strategy for the US had been included in the Healthy People 2010 document and improved as the 2020 objectives. The goal of care for dementia was to reduce the morbidity and costs associated with, and maintain or enhance the quality of life for, persons with dementia, including Alzheimers disease (Dementias including Alzheimers disease, HealthyPeople.gov).

Background

The dementia patients had problems of memory loss and cognitive deficits. This section deals with the pathophysiology involved in dementias so that the reader understood the reasons for the illness. The different types of memory were affected in dementia. Memory was the ability to retrieve stored information. The amygdala and the hippocampus in the brain were directly involved with this function. Declarative and non-declarative types of long-term memory had been recognized (Shagam, 2009).

Storing the facts and retrieving them by conscious recall was termed declarative memory. The semantic memory and episodic memory were the divisions of declarative memory. The semantic memory helped a person to remember general facts and knowledge. Episodic memory assisted in remembering personally witnessed events or experiences. The implicit or non-declarative memory referred to the ability to do things from the experience of learning. These various memories were built into our system without us thinking about them (Shagam, 2009). Working memory was the ability to recall information recently learned like phone numbers and addresses. Remote memory brought back memories of the time long gone by.

The older people who had degenerating nervous systems soon lost these normal functions that facilitated the wonder of memory. What these patients were previously doing well was now forgotten due to the degenerating brain cells recognized as atrophy in imaging records. The fumbling and uncertainty, memory lapses, inability to remember their daily activities and asking the same questions repeatedly were all features of dementia (Memory loss with aging, AAFP).

Alzheimers dementia had slightly differing features. The Alzheimers was the worlds sixth leading cause of death (Alzheimers Association, 2011). This dementia showed decline in the language and defective decision-making abilities. The inability to retrace hidden objects was a typical feature. Soon incontinence of the GIT and Urinary systems made the life of the patient terrible. Their total dependence on carers was inevitable.

Vascular dementia came next in prevalence (Shagam, 2009). The fronto-temporal dementia occurred because the degeneration was focused in that region. Dementia with Lewy bodies had hallucinations, and delusions, sleep alterations and disturbances in the heart rate and digestion. The Lewy bodies were aggregates of alpha-synuclein, ubiquitin alpha B-crystallin and neurofilament proteins (Shagam, 2009).

Diagnosis

Evaluation in the primary care settings was necessary to reach out to and recognize many dementia patients. Treatment challenges were influenced by staff being unable to identify symptoms. The limited time for detailed examination was a problem. Patients did not complain due to the concept that management was not available for dementias including Alzheimers. Cognitive assessment could be enabled by the Mini Mental State Examination (Shagam, 2009).

The perceptions of staff at a primary care center to issues concerning dementia

Harris et al had a randomized controlled trial whereby the perceptions of primary care providers on different aspects of care for cardiovascular disease, diabetes mellitus and dementia were compared (2009). It was found that care providers believed that it was difficult to manage dementia when compared to the other two. Similarly they thought that it was hard to improve the quality of life of patients with dementia.

Routine screening was done for dementia almost as often as for the other two illnesses. Referral was common with diabetes and heart disease but rare for dementia. Effortless care coordination was also not possible for dementia as it was an illness which had a variety of symptoms requiring individualized care. Primary care management of dementia was to focus on referral resources, reduce the difficulty of provision of care and consider the perceptions of the providers for quality-of-life improvement (Harris et al, 2009). Primary care providers could be the earliest people who diagnosed the patients with dementia.

Thought the study results showed that dementia patients were almost neglected by these care providers. The reason could be their ignorance or their lack of time or their feeling that dementia did not merit a reference as it was not treatable. Sufficient training of primary care providers and precise policies for implementation could change the attitude towards dementia. The clustered chart in the next page has been drawn from the study results of Harris et al (2009).

Aggressiveness in dementia

Moniz-Cook and Clarke (2011) had addressed aggressiveness that was found to create chaos in nursing homes. They perceived that 6.9-30% of behavioral problems in nursing homes were accounted for by aggression, one challenging behavior in dementia. Challenging behaviors was a subjective term which explained the responses of the patient of being unreasonable or intense (Keady and Jones, 2010). They were formed from experiences and beliefs.

Aggression, a manifestation of psychosis, was to be treated with antipsychotic drugs for 2 weeks. The internal environmental factors like worry, fear, pain due to some health condition and discomfort were triggers for aggression. External factors included excessive anxiety, incessant conversation and busy episodes in life (Moniz-Cook and Clarke, 2011). Insufficient spaces, the reverberating noise, heat and cold were the accommodation factors which sparked off aggression. One-third of patients did not exhibit aggressiveness. The duration of treatment with antipsychotics was to be determined after weighing the pros and cons of the side effects, the cognitive reduction and death. In general the poor quality of life was evident when the drugs were used (Ballard et al, 2009b). The institution of enhanced psychosocial care could reduce the use of drugs (Fossey et al, 2006).

The causes could be due to distress stimulated by unmet needs which could be physiological, psychological or social. The deficit in the mechanisms for self-control found in frontal lesions could increase the risk of aggression. Hallucinations could trigger aggression (Leonard et al, 2006). Individualized care was recommended. The lack of interpersonal relationship lay behind the aggression which was mostly aimed at the staff. Coping mechanisms which reduced aggressive resistance needed to be chosen (Moniz-Cook and Clarke, 2011).

Classification

The stages of the dementia decided how much to intervene. A patient-centered approach could reveal the behavior behind the person. Subsequently interventions could be devised. Three stages were recognized in dementia (Keady and Jones, 2010). Impaired performance marked the first mild stage but the patient had not reached the stage of helplessness. Complicated tasks or leisure activities could not be performed. The moderate stage showed a further cognitive decline and the patient needed help to execute his daily activities like shopping and handling of money. Increasing restriction of activities was observed. The severe stage saw the patient without intelligible ideation (Keady and Jones, 2010).

Interventions

Several interventions which had worked with dementia included reminiscence therapy, reality orientation, aromatherapy, music therapy and multi-sensory stimulation (Keady and Jones, 2010). Problematic behavior was decreased through three interventions as described by James et al (2008). However these therapies had not considered the causes of dementia while being used (Keady and Jones, 2010). Unmet needs were the significant causes as they included all the factors mentioned under aggression (above). The disease could begin due to the patient attempting to satisfy his unmet needs. Interventions were modified to the requirements of the individual (Keady and Jones, 2010). The final destination was the improvement in the quality of life and elimination of suffering.

Care Plans

Keady and Jones indicated that an individualized care plan for their case study produced good results by one month (2010). Challenging behaviors of aggression and agitation had decreased. The patient was happier and contented. Then he was provided a patient-centered care with appropriate support. He also became more receptive of therapeutic interventions (Keady and Jones, 2010). The individualized care plan had succeeded in toning down the challenging behaviors and rendering the patient more amenable to suitable therapeutic interventions. Improvement of quality of life inevitably happened with the change in personality of the patient.

Management of daily living

Dementia patients who were living at home with their families or group homes or nursing homes preferred to be included in decision-making about their care. These people subsequently had improved well-being and positive demeanor (Oliver et al, 2010). Carers also believed in sharing the decisions on care with the patients. However communication problems and cognitive deficits hampered the involvement. A Talking Mats framework which was suggested by Murphy et al in 2007 indicated a bigger involvement of patients and families than when discussion through mere conversation was implemented (Oliver et al, 2010).

Picture symbols placed on textured mats were used for expression of views by people with communication difficulties. Some cards were picture-free to add the views of the patients. Olivers research using the Talking Mats reported some beneficial results. The participants including the patients and the families were perceived to be more involved with decision-making than through conversations (Oliver et al, 2010). Photographs of the experiment and specifically of the finished mats were taken to study them further. Notes were written in detail too. The dementia patients could manage personal care except for washing, dressing and taking of medicines in which functions they needed daily help (Oliver et al, 2010).

Dementia-friendly neighborhood

The only research exploring the interventions for dementia in the neighborhood was that of Mitchell and Burton (2010). The design for dementia-friendly neighborhoods required the surroundings to be familiar. Spatial disorientation, confusion and anxiety were not to subject the patient to difficulties. Legibility of the signs for different designated buildings was to be ensured. Accessibility was a must. The people in the community needed to enjoy the surroundings. Safety while moving around was significant; harm was not to occur. The primary services were to be incorporated within 500m. of the house and secondary services within 800 m. (Mitchell and Burton, 2010). The services of physicians and psychiatrists were to be arranged within this community.

The Biopsychosocial model

The biopsychosocial model was perceived to be an integrated method of consideration of health and illness (Cwikel, 2006). The components of the sociological, psychological and biomedical models had been incorporated. Four lines of thought were included in this. The formistic thinking divided people into cases and not cases categories. Mechanistic thinking dwelled on the causes for a particular result. The contextual thinking was also called relational thinking. It related an organism to the illness. However the patient was to be focused upon in dementia. Organic thinking spoke about the interaction between many causes which then progressed into many phenomena.

The Biopsychosocial model incorporated the contextual and organic forms of thinking (Cwikel, 2006). It was an interaction of complex proportions of the factors relating to the environmental, psychological, sociological and cultural entities (Cwikel, 2006). This model suited the present study of dementia. Dementia had many causes which were biological, behavioral, psychological, cultural, social and genetic (Cwikel, 2006). The same causes could produce different extents of dementia.

A mind-body unity was obvious in dementia. The mental problems involved emotional, physiological, biological and physical aspects. Treatment was not the intention of the study. Mere maintenance of health was aimed at. A multidisciplinary approach could be the best here (Cwikel, 2006). Psychosocial issues were significant in dementia studies: the patients would be finding ways to assume the role of a healthy person. For these reasons, the biopsychosocial model was found to be the best to study dementia. This model helped in understanding the external and internal influences of the individual (Sperry, 2008). Engels (1977) was the father of this model.

The biological issues, psychological issues and the sociological issues were to be considered equally to study a person or illness. The biological functioning referred to the subcortical systems of the neuroendocrine, autonomic and central nervous systems (Sperry, 2008). The psychological functioning pertained to the cortical and self-conscious internal system. This included the processing of information and communications. The personal feelings, goals and aspirations came under this system. The social functioning and relationship with family, friends, neighbors and community were regarded under the sociological functioning (Sperry, 2008).

The picture on the next page depicting the biopsychosocial model could be interpreted thus. A number of stressors could induce illness. These stressors along with coping efficacy and the neuroendocrine function status determined an episode of illness. If the coping mechanism was poor and the neuroendocrine system was of low function, the illness resulted. Brain pathways and effects like pleasure could be poorly buffered from influences of the external environment. When a huge stressor occurred, the interpretation of the patient could be that he could soon be experiencing a similar stressful episode of earlier times like a separation or bereavement. The patient escaped the after-effects of the huge stressor if his coping mechanism and social supports were adequate (Sperry, 2008).

Individual Psychology model

Individual Psychology was a new development of the biopsychosocial model (Sperry, 2008). In addition to the functions of the biopsychosocial model, this new addition had integrated the holistic functioning.

Biopsychosocial models would soon become a natural part of psychotherapeutic research and treatment protocols. The Individual Psychology model which was an improvement on the biopsychosocial model also would be adapted. The addition of the holistic care added to its value.

Quality of Life Assessment through the biopsychosocial model

Better health care revolves around what quality of life means to the patients (Debb and Blitz, 2010). Dementia patients would have many requirements when they become helpless as they progress from the mild to the severe stages. The biopsychosocial theory analyzed the three aspects of dementia: the biological, psychological and the sociological aspects. The information obtained would be sufficiently vast to identify the patients health status including the illnesses or drawbacks he suffered from. The factors analyzed could be the determinants of quality of life like personal attitudes and beliefs. The sociopolitical factors could be community influence and education (Faleiros and Machado, 2006).

This model was more multimodal, symptom-focused, problem solving-oriented, and aids in the development of specific treatment goals based on the individual (Sperry, 1988, 1999 in Debb and Blitz, 2010). Discovering organ deficiency was another strong advantage of the biopsychosocial model. The clinician understood the illnesses that his patient had apart from the dementia and this model ensured that he did not miss this diagnosis. Investigating the biological deficiencies could help to co-relate them to the environmental stressors.

The presence of several stressors caused psychopathology and the appearance of many new illnesses (Adler, 1927 in Debb and Blitz, 2010). The life tasks of the patient would be affected. The inferiority complex could act as a motivating factor for good and bad results. The behavior of the patient was found altered as a mechanism to face stress. The exploration of the quality of life from a holistic viewpoint could provide the clinician with plenty of information. The systems theory underlies the biopsychosocial model (Debb and Blitz, 2010).

The hypotheses generated were:

1. The quality of life of the dementia patient improved with the individualized plan of care.
2. The quality of life of the dementia patient improved through the competence of the primary care providers
3. The quality of life of the dementia patent improved with the change in perceptions of the primary care providers
4. The quality of life of the dementia patient improved through the use of the biopsychosocial model.
5. The quality of life of the dementia patient improved with the use of the Individual Psychology model.
6. The quality of life of the dementia patient improved with a dementia-friendly neighborhood.
7. The quality of life of the dementia patient with aggression improved through the major use of the psychosocial therapy and lesser drug therapy.

Conclusion

Dementia was an illness which consisted of a group of symptoms characterized by reduction in memory, impairment in the reasoning skills and slow decline of skills required for daily living. It was a disability which could occur at any age but affected mostly the elderly beyond 60 years. Statistics say that 3.8 million of people in the US had dementia (Plassman, 2007). Of the people older than 71years, the incidence was 14% of the population of 35 million. Annual global costs of management of dementia reached to more than $315 billion (Shagam, 2009). The memory loss, deficits in executive functioning and a lesser cognitive functioning reduced the quality of life in the aging days (Shagam, 2009).

Each patient had the right to live a good quality life just like others. Among the many perceptions of primary care providers one significant point was that they thought that it was hard to improve the quality of life of patients with dementia (Harris et al, 2009). They also believed that care coordination could not be provided for dementia like it was done for diabetes and heart disease. Primary care management of dementia was to focus on referral resources, reduce the difficulty of provision of care and consider the perceptions of the providers for quality-of-life improvement (Harris et al, 2009).

Sufficient training of primary care providers and precise policies for implementation could change the attitude towards dementia and make diagnoses after screening. Challenging behaviors referred to the responses of the patient of being unreasonable or intense that could be managed through coping mechanisms in the form of individualized care (Moniz-Cook and Clarke, 2011). The care plans had to be altered as required for each stage of dementia. Therapeutic intervention had to be adjusted according to the unmet needs of the patient which were the significant causes (Keady and Jones, 2010).

Keady and Jones indicated that an individualized care plan for their case study produced good results by one month (2010). The patient was happier and more willing to accept new therapies by one month. The individualized care plan had succeeded in toning down the challenging behaviors and rendering the patient more amenable to suitable therapeutic interventions. Improvement of quality of life inevitably happened with the change in personality of the patient. In Olivers study, the participants including the patients and the families were perceived to be more involved with decision making using the Talking Mats concept than through conversations (Oliver et al, 2010).

Dementia patients who were living at home with their families or group homes or nursing homes preferred to be included in decision-making about their care. Their outcomes turned out to be better. The designing of a dementia-friendly neighborhood enabled the involvement of the neighboring community in the dementia caring. This neighborhood also allowed the dementia patients to move out of their homes for their daily activities as long as they could (Oliver et al, 2010).

Accessibility to primary and secondary services within 800 m. of their home and the ensuring of safety enabled the patients with dementia to live a more satisfying life in the midst of all that was required for managing themselves. When they became helpless, community care was to be arranged for them. The availability of clinicians for their approach could be arranged. The biopsychosocial model was a good model for assessing the unmet needs of the dementia patients and then instituting appropriate therapeutic interventions as it unearthed evidences of the biological, psychological and sociological aspects of the dementia. Therapy would be more complete due to the several causes elicited.

Individual psychology was an improvement on the biopsychosocial model by adding the holistic concept. The factors analyzed included the determinants of quality of life like personal attitudes and beliefs (Debb and Blitz, 2010). Discovering organ deficiency was another strong advantage of the biopsychosocial model. The presence of several stressors and the co-relations could be studied and the reason for the patients converting to psychopathology could be better understood.

The exploration of the quality of life from a holistic viewpoint could provide the clinician with plenty of information (Debb and Blitz, 2010). This search through literature enabled me to confirm that the quality of life of dementia patients could be improved through individualized care plans, the use of the biopsychosocial model and its extension Individual psychology for investigation of dementia and the dementia-friendly neighborhood. Primary care providers were the people who would screen the patients and provide therapy or refer the patients as necessary. The search through the literature had unearthed plenty of ways that made my study worthwhile.

References:

Anderson P. One in seven older Americans has dementia: NIH study. Medscape Today. Web.

Alzheimers Association, 10 warning signs. Web.

Alzheimers Disease International. (2008). The prevalence of dementia worldwide, Alzheimers Disease International Factsheet. Web.

Ballarel, C., Hanncy, M.L., Theoeloukiu, M. et al (2009) The dementia antipsychotic withdrawal trial (DART-AD): long-term follow-up of a randomized placebo-controlled trial. The Lancet Neurology 8 (2): 151  157.

Congden, P. (2007). Dementia prevalence and Health care usage; A Review of Evidence with Focus on Implications for Barking & Dagenham and Havering PCTs. Public Health Report No Dph 165. Barking and Dagenham Primary Care Trust. NHS.

Cwikel, J. (2006). Social Epidemiology: strategies for public health activism. Columbia University Press.

Debb, S.M. and Blitz, D.L. (2010). Relating Ethnic Differences and Quality of Life Assessment to Individual Psychology Through the Biopsychosocial Model. Journal of Individual Psychology, Vol. 66, No. 3, Fall 2010 University of Texas Press, Dementias including Alzheimers disease, 2020 topics and objectives, Healthy People. Web.

Faleiros, F, T, & Machado, N, C, (2006), Assessment of health-related quality of life in children with functional defecation disorders. Journal of Pediatrics, 82, 421-25.

Fossey, J., Ballard, C., Juszczak, E. et al (2006) Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia; cluster randomised trial, BMJ 332; 756-761.

Harris, D.P., Chodosh, J., Vassar, S.D., Vickrey, B.G., and Shapiro, M.F. (2009). Primary Care Providers Views of Challenges and Rewards of Dementia Care Relative to Other Conditions. J Am Geriatr Soc 57:22092216.

James, I., Mackenzie, L., Pakrasi, S. et al (2008) Non-pharmacological treatments of challenging behaviours: Part 2. Nursing & Residential Care. 10, 6, 290-292.

Keady, J. and Jones, L. (2010). Investigating the causes of behaviours that challenge in people with dementia. Nursing Older People, November 2010, Vol. 20(9): 25-29.

Leonard, R., Tinetti, M.K., Allore, H.G., Drickamer, M.E. (2006), Potentially modifiable resident characteristics that are associated with physical or verbal aggression among nursing home residents with dementia Arch Intern Med 166; 1295-1300.

Luengo-Fernandez, R, Leal, J, Gray, A (2010) Dementia 2010. The Prevalence, Economic Cost and Research Funding of Dementia Compared with Other Major Diseases. Web.

Memory loss with aging: whats normal, whats not. American Academy of Family Physicians. Web.

Mitchell, L. and Burton, E. (2010) Designing Dementia-Friendly Neighbourhoods: Helping People with Dementia to Get Out and About. Journal of Integrated Care Volume 18(6): 11-18. December 2010. Pier Professional Ltd.

Moniz-Cook, E. and Clarke, C. (2011). Dementia care: coping with aggressive behaviour Nursing & Residential Care, Vol 13, No 2: 86-90 Mark Allen Publishing Ltd.

Oliver, T.M., Murphy, J., Cox, S. (2010). She can see how much I do! Talking Mats®: helping people with dementia and family carers to discuss managing daily living Housing, Care and Support, Volume 13(3). Pier Professional Ltd.

Plassman, B.L., Langa, K.M., Fisher, G.G., Heeringa, S.G., Weir, D.R. and Ofstedal, M.B. et al. (2007). Prevalence of Dementia in the United States: The Aging, Demographics, and Memory Study Neuroepidemiology;29:125132.

Shagam, J.Y. (2009) The Many Faces of Dementia Radiologic Technology, Vol. 81/No. 2.

Shulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA.1999;282(23):2215-2219.

Sperry, L. (2008). The Biopsychosocial Model and Chronic Illness: Psychotherapeutic implications. The Journal of Individual Psychology.Vol. 64, No. 3.

World Health Organization (2007). International Statistical Classification of Diseases and Related Health Problems 10th Revision. Web.

Worldwide cost for dementia cares U.S. $315 billion annually. Alzheimers Disease International. Web.

Controlling dementia is done with the main aim of reducing the suffering that results from cognitive symptoms while also minimizing the rate of cognitive decline. Management of dementia can be carried out using non-pharmacological and pharmacological treatments to enhance a patients quality of life. Some of the non-pharmacological approaches applied in the management of dementia include stimulating activities, physical exercise, having a healthy diet, and adequate sleep (Arvanitakis et al., 1). Some of the pharmacological treatments applied in the management of dementia are cholinesterase inhibitors, memantine, antidepressants, and antipsychotic medicines (Salamon 1). The methods applied in controlling dementia help to reduce symptoms while also preventing cognitive decline.

Non-pharmacological treatments applied in the control of dementia focus on initiating lifestyle changes to ensure that a person feels good. A dementia patient must stay active through physical exercise since it helps to reduce symptoms such as challenges in thinking, anxiety, and depression. Another non-pharmacological treatment used to manage dementia is having a good sleep, since it helps to create a calm feeling to prevent symptoms from worsening. Having a healthy diet can also play a significant role in slowing down dementia.

Pharmacological treatments cannot help treat dementia since they only help ease symptoms caused by the medical condition. One of the pharmacological treatments applied in the control of dementia is cholinesterase inhibitors such as donepezil and galantamine. Cholinesterase inhibitors play a significant role in reducing the breakdown of brain chemicals utilized in memory and judgment (Salamon 1). Another treatment used to manage dementia is memantine, which helps to control a chemical in the brain used for learning and memory. Antidepressants can also be used to enhance a patients mood and reduce the likelihood of irritability. Antipsychotic medicines also help manage dementia by helping to control hostility, agitation, and illusions.

In conclusion, the treatments applied to control dementia help to reduce symptoms while also preventing cognitive decline. Non-pharmacological treatment applied in the management of dementia help to reduce symptoms of the condition by initiating lifestyle changes such as diet, exercising, and having a good sleep. Pharmacological treatments applied in the management of dementia include cholinesterase inhibitors, memantine, antidepressants, and antipsychotic medicines.

Works Cited

Arvanitakis, Zoe, Raj C. Shah, and David A. Bennett. Diagnosis and management of dementia. Jama 322.16 (2019): 1589-1599. Web.

Salamon, Maureen. What Are the Treatments for Dementia? WebMD, 2018, Web.

The worlds population is aging, and advances in modern health care have meant that people are living longer. However, at the same time, the number of people suffering from non-communicable diseases is increasing. One of the essential tasks of todays health care system is to preserve the older generations health and increase the duration of active life. The medical and social significance of age-related diseases, particularly cognitive disorders and dementia, is steadily growing in the aging society.

Dementia

Dementia is a syndrome caused by various progressive disorders that result in impairment of memory, attention, thinking, behavior, and ability to perform daily activities. The greatest manifestation of cognitive impairment is seen in old age against a background of brain impairment caused by diseases of the nervous system. However, it is worth remembering that dementia is not a normal aging condition. Starting with benign forgetfulness, dementia in 5-10 years leads to household and professional skills loss. It ends with the complete loss of basic self-care skills (Hickey and Bourgeois, 143). Dementia is a chronic, general, usually irreversible decline in cognitive function, affecting all aspects of cognitive activity.

This disease affects all parts of the body, including the cells. The immune system cells of the brain, which begin to absorb nutrients, play a role in initiating the process of nerve tissue degeneration. Microglia cells, a specialized class of glial cells of the central nervous system, act as phagocytes destroying infectious agents and destroying nerve cells (Hickey and Bourgeois, 135). Thus, they are active participants in the development of dementia.

This disease also has a devastating effect on brain tissue. Frontotemporal dementia is caused by the depletion of frontal or temporal lobe tissue (Innes 146). It can also give complications in the form of misfolded proteins in the brain, which in turn cause dangerous adverse reactions and misfolded proteins in other cells. Because the disease is chronic and irreversible, it has a devastating effect on all organ systems, destabilizing them.

Psychological Effects

Changes in emotions for people with dementia are often sporadic, with the patients having little control in their emotive reactions. Dementia patients suffer from mood changes, poor emotional expression, and overreacting to situations. These patients appear uninterested in most activities due to their inability to express their feelings effectively (Reul et al.). These patients are also excessively anxious and easily agitated while displaying symptoms of depression. Insomnia is a common occurrence in dementia, with patients having difficulties getting enough sleep at night. The patients suffer from repetitive questioning of issues already raised, and this may irritate caregivers. Caregivers must understand the mental decline stems from an illness rather than a deliberate attempt to frustrate them.

The confidence and self-esteem of dementia patients experience a rapid decline with decreased belief in their judgment. These patients are constantly worried they may be making wrong decisions. They experience stigma and social demotion, as they cannot easily interact with other people (Reul et al.). The relationships these people held dear in the past are also battered by this condition, as they cannot maintain them effectively by showing the necessary feelings. The rarest psychological manifestations for people with dementia are euphoria, hallucinations, and disinhibition. The most significant clinical presentations of this condition are depression, apathy, and anxiety.

Diagnosis

The diagnosis of dementia is made clinically; laboratory and neuroimaging tests are usually used for differential diagnosis and identification of curative diseases. Treatment of such a disease is primarily supportive. In dementia, all cognitive functions are affected. The disease develops gradually, but family members may note the sudden onset of symptoms when impairment is already pronounced. Often, loss of short-term memory may be the first symptom. Although the symptoms of dementia have a continuous course, they can be divided into stages such as early, intermediate, and late. In the early stages of the disease symptomatology, there is a loss of memory of recent events. It becomes challenging to learn and retain new information. Language problems, mood swings, and the development of personality changes are also noted.

Patients may experience progressive difficulties in self-care in everyday life. Abstract thinking, the ability to get to the heart of problems, and critical thinking may also be reduced (Hickey and Bourgeois, 141). In the intermediate stage, symptoms worsen, and patients become incapable of learning and reproducing new information. Memory for distant events decreases but is not entirely lost. A person in the intermediate stage of the disease may need assistance maintaining the essential elements of daily activities. In the later stages of the disease, patients cannot walk, eat independently, or perform any other activities of daily living (Innes 45). Short- and long-term memory is completely lost, therefore, patients become dependent on outside help, making it necessary to admit them to long-term care facilities.

Treatment

Controlling of dementia is done to reduce the suffering that results from cognitive symptoms while also minimizing the rate of cognitive decline. Management of dementia can be carried out using non-pharmacological and pharmacological treatments to enhance a patients quality of life. Some of the non-pharmacological approaches applied in the management of dementia include stimulating activities, physical exercise, having a healthy diet, and adequate sleep (Arvanitakis et al., 1). Some of the pharmacological treatments applied in the management of dementia are cholinesterase inhibitors, memantine, antidepressants, and antipsychotic medicines (Salamon 1). The methods applied in controlling dementia help to reduce symptoms while also preventing cognitive decline.

Non-pharmacological treatments applied in the control of dementia focus on initiating lifestyle changes to ensure that a person feels good. A dementia patient must stay active through physical exercise since it helps to reduce symptoms such as challenges in thinking, anxiety, and depression (Innes 45). Another non-pharmacological treatment used to manage dementia is having a good sleep since it helps to create a calm feeling to prevent symptoms from worsening. Having a healthy diet can also play a significant role in slowing down dementia.

Pharmacological treatments cannot help treat dementia since they only help ease symptoms caused by the medical condition. One of the pharmacological treatments applied in the control of dementia is cholinesterase inhibitors such as donepezil and galantamine. Cholinesterase inhibitors significantly reduce the breakdown of brain chemicals utilized in memory and judgment (Salamon 1). Another treatment used to manage dementia is memantine, which helps to control a chemical in the brain used for learning and memory. Antidepressants can also be used to enhance a patients mood and reduce the likelihood of irritability. Antipsychotic medicines also help manage dementia by helping to control hostility, agitation, and illusions.

In conclusion, the treatments applied to control dementia help to reduce symptoms while also preventing cognitive decline. Non-pharmacological treatment applied in the management of dementia help to reduce symptoms of the condition by initiating lifestyle changes such as diet, exercising, and having a good sleep. Pharmacological treatments applied in the management of dementia include cholinesterase inhibitors, memantine, antidepressants, and antipsychotic medicines.

Conclusion

To summarize, dementia is a complex, incurable, and progressive disease affecting all human organ systems. The central part of its treatment is maintenance therapy. This disease also has a significant effect on the emotional state of the patient. He may experience irritability, anger, and disorientation. In the late stage of the symptomatology, the patient must be placed in a specialized care facility, as he loses his independence completely.

Works Cited

Arvanitakis, Zoe, Raj C. Shah, and David A. Bennett. Diagnosis and management of dementia. Jama 322.16 (2019): 1589-1599. Web.

Hickey, Ellen, and Michelle Bourgeois, editors. Dementia: Person-centered assessment and intervention. 2^nd ed., Routledge, 2017. Web.

Innes, Anthea et al. Dementia: The basics. Routledge, 2020. Web.

Reul, Sophia, et al. Can cognitive assessment really discriminate early stages of Alzheimers and behavioral variant frontotemporal dementia at initial clinical presentation? Alzheimers Research & Therapy, vol. 9, no. 1. 2017. Web.

Salamon, Maureen. What Are the Treatments for Dementia? WebMD, 2018. Web.

The article Pain management in patients with dementia by Achterberg et al. (2013) is a literature review that explored four main perspectives concerning pain management among patients with dementia in order to make recommendations for further research and practice. Researchers explored the biological, assessment, organizational and educational, and practice perspectives. With regards to biological perspective, it was found that there is evidence from previous research that dementia had an impact on the perception and processing of pain. Concerning the assessment perspective, researchers found that the loss of communication ability presented a significant challenge for reporting pain.

As to the educational and organization perspective, high-quality training is essential for addressing the challenges of pain management in patients with dementia since the study identified gaps in staff knowledge. In practice, pain among patients with dementia is expressed through challenging behavior (Achterberg et al., 2013), so researchers underlined the need for more reliable studies with larger sample sizes to determine what interventions could be effective or not.

The findings of the literature review pointed to the lack of efforts with regards to effective assessment and treatment of pain among patients with dementia in different clinical contexts. Researchers identified the flaws existing in the process of pain assessment since dementia is a problem that impairs an individuals cognition.

Because dementia and pain are very common among elderly patients (due to the prevalence of conditions such as cardiovascular disease or arthritis), there is a need for better management efforts and clear guidance for health care providers (including nurses and pharmacists) with regards to making informed decisions when dealing with patients with dementia. Collaborative efforts should be further explored in future research to ensure subsequent improvements in the sphere of managing pain among patients with dementia (Achterberg et al., 2013).

Pain Assessment in Advanced Dementia Scale (PAINAD) is an assessment tool used by health professionals to assess the severity of pain among patients who experience severe demonstration. The tool requires a health care provider to observe a patient with dementia for a period of five minutes in order to score his or her behaviors. Such behaviors include breathing (independent of vocalization), negative vocalization, facial expression, body language, and consolability (Pain Assessment in Advanced Dementia Scale, n.d.).

It is allowed to observe a patient in a context of different settings, for example, in the state of their rest or after the administration of pain relief medication. Observing a patient in various situations can allow health care providers to see whether the environmental factors can affect specific behaviors. To give some examples, breathing can be characterized as normal, occasional labored breathing, or noisy labored breathing (Pain Assessment in Advanced Dementia Scale, n.d.). Body language, on the other hand, can be relaxed, tense, and rigid (Pain Assessment in Advanced Dementia Scale, n.d.).

The PAINAD tool provides explanations for scores from 0-2 points that rate the behaviors exhibited by patients. The total score can range from 0 to 10 points in total. According to Pain Assessment in Advanced Dementia Scale (n.d.), scores from 1-3 indicate mild pain, 4-6 are indicative of moderate pain while severe pain is represented by scores 7-10. By determining the level of pain a patient with dementia experiences, a healthcare provider can come up with an action plan for administering treatment to relieve the pain and improve the overall health outcomes.

References

Achterberg, W. P., Pieper, M. J., van Dalen-Kok, A. H., de Waal, M. W., Husebo, B. S., Lautenbacher, S.,&Corbett, A. (2013). Pain management in patients with dementia. Clinical Interventions in Aging, 8, 1471-1482.

Pain Assessment in Advanced Dementia Scale. (n.d.). Web.

Introduction

Dementia is not one specific disease but is rather a group of conditions that can be characterised by the loss of at least two vital brain functions such as memory loss and judgement. The symptoms of which can be substantial, including but not limited to forgetfulness, a limited set of social skills and long- or short-term memory loss. Alzheimer’s disease is the most common form of dementia which affects up to 70% of all dementia patients.

It is a degenerative brain disease that destroys brain cell connections eventually leading to destroyed memory and other important mental functions. Complex tasks are arbitrated in the brain through the connections between brain cells (neurons) which are named synapses. In a healthy adult brain, there are approximately 100 billion brain cells, each one of which is connected to its partner by 5-10,000 synapses.

Every second we are alive the brain forms a million new connections with a million new synapses. The pattern and strength of these connections is always changing and as such one brain is entirely unique from another. It is in these ever-changing cell connections that hold our most precious memories or where our most familiar habits are learned and our own personalities are shaped, by the reinforcement of certain brain activity patterns and the loss of others.

While there is no official cure for Alzheimer’s there have been many studies by music therapists into the effects that music has on treating these patients and this has been seen as a successful treatment resulting in brightened moods of patients in a depressive state and even the recollection of memories by previously idle patients.

In this report I will be investigating the effects of music therapy on patients who have been diagnosed with dementia through the focus of how music boosts memory in Alzheimer’s patients and how music can improve the moods and attitudes of people diagnosed with Alzheimer’s.

Music boosts memory in Alzheimer’s patients

Music improves the moods and attitudes of Alzheimer’s patients

Music has been held in high appraise by many of the great philosophers including Kant, Nietzsche, Schopenhauer, Plato and Pythagoras. Plato stated that “Music is a moral law. it gives soul to the universe, wings to the mind, flight to the imagination, and charm and gaiety to life and to everything.” And Schopenhauer can be quoted saying “The inexpressible depth of music, so easy to understand and yet so inexplicable, is due to the fact that it reproduces all the emotions of our innermost being, but entirely without reality and remote from its pain… music expresses only the quintessence of life and its events, never these themselves.” It is through these quotes that can give us an idea of how powerful music can be on the brain. It has a direct connection to our emotions and our brains are able to subconsciously interpret the many attributes that make up a song which makes the brain able to instantly perceive music.

Music evokes memory-bringing emotions

Music, through the evocation of emotion has been identified as being able to bring memories from the back of our minds to the centre of our thought. In even the most advanced of Alzheimer’s patient’s music can evoke emotion. Neurologist Oliver Sacks has stated that “Music evokes emotion, and emotion can bring with it memory… it brings back the feeling of life when nothing else can.” and that ‘Music imprints itself on the brain deeper than any other human experience,’. When music is included with everyday activities it can develop a rhythm that allows for the recollection of the corresponding memory of that activity which can improve cognitive ability over time.

Music can increase emotional and physical closeness

In the very late stages of dementia, the ability to share emotions with other humans is often lost but through music it can lead to dancing which leads to emotional responses such as hugging, kissing and touching which brings with it security and memories that may have been otherwise lost.

Music is able to shift moods, decrease stress and stimulate positive interactions

The Alzheimer’s Foundation of America has stated that “When used appropriately, music can shift mood, manage stress-induced agitation, stimulate positive interactions, facilitate cognitive function and coordinate motor movements.” The perception of music and sounds is instinctual, it is extremely deep rooted in our brains and as long as we are able to hear, we are able to perceive what we are hearing and separate it into different emotions. It has been found that even plants, which lack brains or central nervous systems, respond to certain types of sounds such as vibrations that mimic those of a caterpillar feeding. Music requires little to no mental processing making music therapy available to all kinds of dementia patients.

References

1. Sauer, A. (2014, July 21). 5 Reasons Why Music Boosts Brain Activity. Retrieved from https://www.alzheimers.net/why-music-boosts-brain-activity-in-dementia-patients/
2. (2012, April 16). How music improves the memory of dementia patients. Retrieved from https://theweek.com/articles/476420/how-music-improves-memory-dementia-patients
3. Seligson, S. (2010, June 15). Music Boosts Memory in Alzheimer’s. Retrieved from http://www.bu.edu/articles/2010/music-boosts-memory-in-alzheimers/
4. Gill, R., & Crumo, I. (2018, September 14). HOW MUSIC COULD REVOLUTIONISE DEMENTIA CARE. Retrieved from https://pursuit.unimelb.edu.au/articles/how-music-could-revolutionise-dementia-care
5. Gold C, Eickholt J, Assmus J, et alMusic Interventions for Dementia and Depression in ELderly care (MIDDEL): protocol and statistical analysis plan for a multinational cluster-randomised trialBMJ Open 2019;9:e023436. doi: 10.1136/bmjopen-2018-023436
6. Northwestern University. (2011, May 12). Musical experience offsets some aging effects: Older musicians excel in memory and hearing speech in noise compared to non-musicians. ScienceDaily. Retrieved September 11, 2019 from www.sciencedaily.com/releases/2011/05/110511170931.htm
7. Moreira, S. V., Justi, F., & Moreira, M. (2018). Can musical intervention improve memory in Alzheimer’s patients? Evidence from a systematic review. Dementia & neuropsychologia, 12(2), 133–142. doi:10.1590/1980-57642018dn12-020005

It began with the little things. Firstly, she forgot my name. Next, she sent my mum three birthday cards. She then was forced to give up playing the church organ since she played too many or too few verses, or even the completely wrong tune. My family and I could only do our best to adapt and support my Auntie Shelia as our worst fears were realised; she was diagnosed with dementia.

‘Someone in the world develops dementia every three seconds.’ (Dementia statistics | Alzheimer’s Disease International, 2020). It has been estimated there are 850,000 people with dementia in the UK, which is expected to rise to 1.6 million people by 2040 (Facts for the media, 2020). Approximately ‘52% of the UK public know someone who has been diagnosed with a form of dementia’ (Public attitudes towards dementia, 2020). Although these statistics are startling, it must be stressed that each number reflects a human life and that with every diagnosis, another family is affected.

Dementia describes a collection of diseases that trigger a loss of brain function and is classed as a ‘neuropsychiatric syndrome characterised by cognitive decline’ (Abraha et al., 2017). Most types of dementia are caused by a build-up of abnormal protein in the brain, leading to a reduction in the functioning of nerve cells and ultimately nerve cell death (Types of dementia, 2020). Alzheimer’s disease is the most common form of this type of dementia, affecting between 50-70% of cases (Facts for the media, 2020). Unlike Alzheimer’s disease, vascular dementia is caused by reduced blood flow to the brain as a result of narrowing or blockage in the blood vessels supplying the brain (Types of dementia, 2020). This affects up to 20% of those diagnosed with dementia (Facts for the media, 2020). Patients with dementia often exhibit an increased difficulty in performing daily tasks, maintaining social capabilities and remaining independent (Gómez-Romero et al., 2017). Dementia has a wide-reaching impact on the individual, their family and the wider society.

Due to the progressive nature of the disease, much research has been conducted to determine which methods of treatment are most appropriate and effective in delaying and possibly reversing the cognitive decline of patients and in managing the day to day impact of the disease. Amongst possible treatments, the effectiveness of music therapy has been highlighted. Research suggests it may help to reduce anxiety, depression and deterioration of speech quality of patients with dementia, whilst also enhancing their quality of life and the experience of their carers (Burns and Morris, 2018). Pharmacological treatments such as antipsychotic drugs are widely prescribed to control increased agitation, which is often more prevalent as the severity of the dementia decreases. However, researchers warn of the increased risk of medication misuse and the increased cost to NHS Services which pharmacological intervention may bring (Pedersen et al., 2017). The total cost of dementia care in the UK is currently £36.7 billion a year (How much does dementia care cost?, 2020).

Unlike medication which may have undesirable side effects and less than adequate results (Svansdottir and Snaedal, 2006), music therapy may provide a safer, effective and more enjoyable method of attempting to delay the sharp cognitive, behavioural and emotional decline of patients with dementia.

This report will describe the possible benefits of music therapy in the treatment of patients with dementia. The success of music therapy will be evaluated by considering its psychological benefits for patients with dementia, using evidence gained from clinical trials; its ability to enhance patients’ quality of life through increased social interaction and improved experience of care, and the ability to roll out this intervention across the wider NHS and social care community.

It is important to define the terms music therapy and music intervention, both of which play an important role in the non-pharmacological treatment of patients with dementia. Music therapy is the clinical use of music by a credited professional to ‘improve [the] physical, social, communicative, emotional, intellectual and spiritual health and wellbeing’ of patients (About WFMT, 2011). This may involve either active elements, requiring physical participation in events such as singing, or receptive elements (passive actions) for example listening to music through headphones (van der Steen et al., 2018). These are tailored to the individual patient’s setting and preferences. Music intervention involves the ‘controlled use of music in a therapeutic setting’ (Pedersen et al., 2017) where the prescribing of personalised playlists using music preferences is a common practice. This report will mainly aim to focus on the benefits of using songs during interventions, including the use of playlists and singing in choirs.

1. Abstract

The aim of this study is to understand the perceptions and experiences of trained volunteers in caring for patients in dementia-palliative ward in Singapore.

Methods

A descriptive qualitative research study will be conducted in Assisi Hospice (AH). Purposive sampling will be used to recruit 20 participants. The data will be collected through face-to-face semi-structured interviews and will be analysed using thematic analysis.

Significance of the study

This study will provide beneficial insights into reasons and factors influencing volunteers choosing to contribute in palliative care settings in Singapore. The information will be a good direction for strategic planning for recruiting and retaining trained volunteers in dementia palliative care.

Keywords

Dementia, Experiences, Palliative, Perceptions, Singapore, Volunteer

2. Introduction (300 words)

It was estimated that in dementia has affected 50 million people worldwide in 2018 and this number is expected to rise to 82 million in 2030 and 152 million in 2050 (Alzheimer’s Disease International 2017). In Singapore, this disease currently affects 82,000 people and the number is expected to exceed 100,000 in a few more years (WiSE study by the Institute of Mental Health, 2015).

Dementia is a progressive, incurable disorder that severely limits an individual’s functional ability and quality of life. Depending on the progression or stages of the condition, patients experience widespread impairment of mental function which may include memory loss, language impairment, disorientation, personality changes, difficulties with activities of daily living, neglect and psychiatric syndromes. Although it is a condition with increasing prevalence and complex needs, patients with dementia are less likely to have palliative care planning than those with terminal cancer, as people do not usually recognise dementia as a terminal illness that one can die from.

Due to the prevalence of dementia, the World Health Organization issued a statement on the importance of expanding palliative care services to include dementia (WHO, 2015). Palliative care not only improves the quality of life and death of patients suffering with dementia, but it also provides vital support for carers and family members. Due to the labour intensiveness of caring for people with dementia – both management of physical and behavioural symptoms of person with dementia (PWD) can be mentally taxing for the nurses to handle alone.

The inclusion of volunteers in palliative care has been found to be a positive contribution to not only the well-being of the patients but also to palliative healthcare professionals. An important volunteer task in palliative care is to provide emotional, social support, and companionship to the patient. In addition, volunteers can play an important role by alleviating the nurses’ workload by assisting in time-consuming basic care such as feeding or by supervising patients on fall precautions. However being a volunteer is known to include a lot of stress, thereby it is crucial that appropriate training is provided for volunteers to support dementia-palliative inpatient care services.

Since the availability of volunteering programme is one of the most valued facilitators in dementia-palliative care, there is a need to explore volunteers’ volunteering experience to identify areas of improvement in the programme. Hence, this allows the identification of barriers and motivators of volunteering work in dementia-palliative care, that may help with the development of a sustainable volunteering model.

3. Overview Of Literature (1500 words)

A comprehensive search of literature was conducted in online databases such as NUS Library, Cochrane Library, PubMed, Google Scholar and ScienceDirect. The key search terms used included dementia, experiences, palliative care, perceptions and volunteer. Both quantitative and qualitative evidence are used to search for journal articles in English that are published between 1999 and 2019. A secondary search was conducted by reviewing the reference lists of gathered articles. In general, the articles found were recent and were mainly from western countries, such as the United Kingdom, United States and Australia. There were limited information from a Singaporean perspective or a South East Asian perspective.

To meet the growing need for the availability of trained volunteers to enhance the PWD’s quality of care, there is a greater need to explore the effects of volunteerism in a clinical setting, especially dementia-palliative ward. There were several recurring themes within the literature with regards to effects of volunteerism in a palliative care setting. The four distinct themes include: the need for palliative care for dementia, challenges in providing person-centred care, role of volunteerism in dementia palliative care setting and challenges of volunteerism.

(i) Palliative care for dementia

In dementia, both the number and severity of symptoms increase throughout the course of the illness, making daily functioning and participation in social activities increasingly difficult. Due to the complexity in diagnosing the onset and severity of dementia, it is particularly challenging for doctors to determine with much precision how long a person with advanced dementia can expect to live. Prior to the setting up of this palliative care wards in Singapore, those with advanced dementia mostly live and die at home or in nursing homes. Although palliative care in dementia is increasingly being studied, high quality evidence is not yet available to show the importance of dementia care, especially in an ageing country like Singapore (van der Steen, 2010).

Early access of palliative care not only help address patients’ and families’ concerns and needs, it improves the quality of life and may even prolong the life of the patients (van der Steen et al, 2014; Temel et al, 2010).

(ii) Challenges in providing person-centered care

The palliative care approach provides appropriate control of symptoms, emphasizes overall quality of life and takes a holistic approach. It should also involves the patient and family in decisions and foster good supportive communication between patients, carers and non-carers. Such approach is classified as person centred care. As providing care for PWD is often exhausting and stressful for families and often at a late stage of the disorder, it would be beneficial if PWD get formal care support.

Several papers suggested that a palliative care approach in dementia is favoured by not only the patients, but also both formal and informal carers (Diwan et al, 2004; Hertogh CMPM, 2006; Nakanishi et al, 2017; Epp, 2003; Koren, 2010). Another systematic review and meta-analysis from Kim and Park (2017) provided further evidence for person-centred care in clinical practice for people with dementia. Brooker (2004) outlined the four key aspects integral to a person-centered care approach for PWD and these components are: (a) valuing and respecting persons with dementia and their carers; (b) treating people with dementia as individuals with unique needs; (c) understanding the perspective of PWD and (d) creating a positive social environment in which PWD can experience. Thus, it is vital to identify strategies and interventions to enhance the care and experience of PWD in long term care facilities, in order to enable them to receive the best care whilst retaining their level of functioning, respecting dignity and ensuring their safety and wellbeing.

(iii) Role of volunteerism in a dementia palliative care setting

In palliative care setting, nurses are largely involved in managing the physical, psychological, emotional symptoms experienced by patients. Especially in an advanced dementia setting, nurses often suffer from emotional exhaustion when having to deal with increased clinical demands from PWD and their families. A national survey conducted in Germany revealed that more than half of the surveyed practitioners felt burdened when they are unable to achieve objectives of palliative care, with most of them identifying relationship building with patients and families and frequent patients death as burdening factor (Müller et al, 2009). As palliative care practitioners are responsible for providing the majority of end-of-life care, it is physically demanding and stressful for them if they have to continue providing 100% of companionship and support to the patients and their families. A study by McDonnell et al (2014) reported that volunteer intervention were highly valued by nurses and their active presence with patients meant that nurses are able to concentrate on tasks that only qualified nurses can perform, such as the administration of medications. Staff also appreciated the presence of volunteers as they are able to concentrate on nursing tasks, knowing that the patient are under good companions.

Hospice palliative care volunteers can be a tremendous source of support, comfort and companionship for patients and family members living with life-limiting illnesses. The findings from a systematic review of qualitative studies by Burbeck et al (2014), suggested that a volunteer role is largely distinct from that of a paid staff, and is generally social in nature. In a palliative care setting, volunteers contribute by: (i) direct patient support; (ii) providing clinical support services such administrative role and (iii) fund-raising. The data from the National Hospice and Palliative Care Organisation (2012) showed that 60% of volunteer contribution is in direct patient support. Volunteers not only provide emotional or social support to patients, they also support nursing care by undertaking task-oriented activities, such as serving patients’ meals and drinks.

The reason why volunteers in palliative care chose to be volunteers because they have had experience with serious illness and death with their closed ones and they wish to help and care for suffering patients ( Jack et al, 2011). Volunteering often provide them with benefits such as growth, satisfaction and an understanding of what is important in life (Claxton-Oldfield, 2015; Andersson & Ohlen, 2005; Soderhamn et al, 2017).

(iv) Challenges for volunteers in dementia palliative care setting

Being a volunteer in palliative care is known to include a lot of stress. Volunteers without sufficient training are often challenged in responding to dementia-linked behaviours, which can lead to frustrating difficulties during interaction. Whilst volunteers may be evidenced to enhance the care of hospital inpatients in other settings, people with dementia require specialist care. One of the significant challenges faced by both formal and informal care providers in dementia palliative care, is the lack of training and education. Training is critical to ensure that palliative care volunteers are prepared for their role in supporting dying persons and their families. Studies have shown that volunteers generally felt more significantly able to cope with bereavement after receiving training experience (Claxton-Oldfield et al, 2007; Stecho et al, 2012).

Another challenge highlighted was that often medical professionals are not well educated in palliative care. Without appropriate training or guidance from formal carers, volunteers found it difficult to reach out and to assist nurses with dementia-specific skills (Ryan et al, 2011). This makes quality palliative care more difficult to provide.

3.1. Research Gap (200 words)

Our literature review found that experience of palliative care patients and their families having a volunteer involved in their care and the impact a volunteer may have on their wellbeing are understudied. There is also limited evidence that palliative care interventions that involve volunteers have a positive impact on family satisfaction with care and may even lengthen patient survival. With the growing needs of ageing populations and the limitation in resources allocated to healthcare, there are increasing numbers of papers suggesting a partial shift from formal healthcare services towards community care through volunteerism. However evidence supporting the feasibility of such a shift is insufficient. The extent of relevant training and barriers to maintaining a volunteer workforce are also unknown.

More in-depth research on the effect of volunteering for the volunteers would identify the benefits as well as the areas needed for support and training to ensure the successful retention of volunteers and to maximise the potential benefits of volunteerism scheme to everyone involved.

4. Research Aims (52)

The aim of this study is to understand the perceptions and experiences of trained volunteers in caring for patients in dementia-palliative ward in Singapore. This study will also seek to explore the trained volunteers’ reasons in providing care, as well as their motivation to continue volunteering and challenges faced in dementia-palliative ward in Singapore.

5. Methodology (900)

5.1. Research Design

A descriptive qualitative study design will be adopted for this study. Such design seeks to understand a phenomenon and explore the perspectives of the people involved where time and resources are limited. Additionally, it is particularly relevant to use a hermeneutic phenomenological approach as this study intends to explore and reveal the experiences of the participants and also the interpretations of their experience using interviews and the analysis of the sampling (Malagon-Maldonado, 2014).

5.2. Sampling

The population for this study is dementia care volunteers. Purposive sampling will be utilised to recruit volunteers from Assisi Hospice (Robinson, 2014). The estimated number of participants will be 20. Data will be collected until data saturation is reached – when fresh data collected no longer provides any new or relevant data.

The inclusion criteria for participants are those who:

1. Are above 21 years of age.
2. Can converse in English.
3. Have undergone 2-days training workshop as carers, provided by Assisi Hospice.
4. Have at least 6 months of regular volunteering, with minimum commitment of once per week at any timing.
5. Have experiences in volunteering in dementia and/or non-dementia wards.

The exclusion criteria for participants are those who:

1. Have been diagnosed with any cognitive issues.
2. Have hearing and/or visual impairments.
3. Have any terminal illness.

These criteria ensure the reliability of the data collected, heterogeneity and representativeness of the sample population.

5.3. Interview Guideline Development

An interview guideline (Appendix A) will be developed by _. Therefore, this study can fulfil the key research aims, which include the reasons for volunteering, their perceptions of volunteering in dementia-palliative ward, their motivations and challenges faced when caring for patients in dementia-palliative ward. After developing the guideline, it will be sent to experts from the National University of Singapore and Quality and Research Work Group of Assisi Hospice, as well as the volunteer coordinators of Assisi Hospice. A pilot study will then be conducted to test the interview guideline with two volunteers and be refined before using it in the main study.

5.4. Data Collection Procedure

A descriptive qualitative research design is used to collect data via face-to-face semi-structured interview. Such interview approach is chosen due to its adaptability and ability to provide detailed descriptions of the participants’ experience in large amount (Sandelowski, 2000). Interviews are conducted at the convenience of their schedule without any inconvenience or interference to the private time of the volunteers.

After obtaining ethics approval, the volunteers will be selected based on the inclusion and exclusion criteria through purposeful sampling. The researcher will approach the volunteers at Assisi Hospice to provide more study information using a Participant Information Sheet (Appendix B). Written consent and voice-recording consent forms (Appendix C) will then be provided for the volunteers who are willing to participate in the study. A demographic profile questionnaire (Appendix D) will be given to the volunteers for the assessment of volunteers’ socio-demographic characteristics such as their age, gender, volunteer experience, training in palliative care, and their knowledge and attitude towards palliative care. The interview will be conducted in a room, where it is quiet and cooling enough to provide a comfortable and conducive environment to facilitate an interview with volunteers. Should the interview be interrupted by any situations, the researcher will resume the interview thereafter.

All interviews will be conducted in English by the researcher to prevent mistranslation. All interviews are held at Assisi Hospice. The interviews will be recorded and transcribed verbatim to enhance credibility of data. Field notes will be taken during interview. Ample time will be given to the participants to reduce any time-related stress. Follow-up questions such as “can you tell me more about that?”, “What did it mean for you” and “Can you elaborate on it?” were asked to obtain richer descriptions. Each interview will last up to 60 minutes.

5.5. Ethical Considerations

Ethics approval for the study will be obtained by Alice Lee Centre for Nursing Studies (ALCNS) and the management committee of Assisi Hospice. At the time of enrolment, the protocol and nature of study will be explained thoroughly to the participants to obtain their consent. Participants will be guaranteed anonymity, and voluntary participation will be emphasised. They are also informed that they are free to withdraw from the study at any time and their refusal to participate will not affect them in any way.

5.6. Data Analysis

Interviews will be transcribed verbatim and anonymised during data analysis, thus removing identifying features. Thematic analysis will be used to analyse the data collected (Jack et al, 2018).

5.7. Rigor of Study

Lincoln and Guba’s framework are adopted to ensure that rigour is in place throughout the study process. The framework comprises of credibility, dependability, confirmability and transferability (Guba & Lincoln, 1994).

6. Study Significance (200)

Due to the demands of an ageing population and low manpower supply, many countries, including SIngapore, are pushing for a partial shift from formal health care services to community care. There is an increased emphasis on patient-centred care and advance care planning, to fulfil the needs of patients in the last days of life, as well as those of their caregivers and families. However the feasibility of such a shift is still not evident in most countries. Many studies showed that volunteer presence not only can offer practical and emotional support to patients, but is able to ease resource constraints in professional healthcare of palliative care setting. But the extent of relevant training and barriers to maintaining a volunteer workforce are still unknown.

This study will provide beneficial insights into reasons and factors influencing volunteers choosing to contribute in palliative care settings in Singapore. The information will be a good direction for future research to construct a national or organizational level framework for recruitment and training of more volunteers to assist in community-based care. The result can also provide a platform to discuss issues regarding strategies to improve palliative care at a national level.

7. Proposed Timeline

Milestones

Target Duration

Year 2019

Year 2020

May

Jun

Jul

Aug

Sep

Oct

Nov

Dec

Jan

Feb

Mar

Literature Review

Completion of Research Proposal

Obtaining ethics approval

Pilot Study

Data Collection

Data Analysis

Revision of study and manuscript preparation

8. References

1. Andersson B, Öhlén J. Being a hospice volunteer. Palliative Medicine. 2005;19: 602–609.
2. Brooker D. What is person centred-care for people with dementia? Reviews in Clinical Gerontology 2004; 13: 215-222.
3. Burbeck R, Candy B, Low J et al. Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies. BMC Palliative Care 2014; 13(3).
4. Claxton-Oldfield S, Crain M, Claxton-Oldfield J. Death anxiety and death competency: The impact of a palliative care volunteer training program. American Journal of Hospice and Palliative Medicine 2007; 23(6): 464-468.
5. Claxton-Oldfield S. Hospice palliative care volunteers: The benefits for patients, family caregivers, and the volunteer. Palliative & Supportive Care 2015; 13(3): 809-813
6. Diwan S, Hougham GW and Sachs GA. Strain experienced by caregivers of dementia patients receiving palliative care: Findings from the Palliative Excellence in Alzheimer’s Care Efforts (PEACE) program. Journal of Palliative Medicine 2004: 797-807.
7. Epp TD. Person-centred dementia care: A vision to be refined. The Canadian Alzheimer Disease Review 2003; April: 14-18.
8. Guba EG, Lincoln YS. Competing paradigms in qualitative research. In: Denzin, NK; Lincoln YS, editors. Handbook of qualitative research. London: Sage; 1994, pp. 105-117.
9. Hertogh CMPM. Advance care planning and the relevance of a palliative care approach in dementia. Age and ageing 2006; 35: 553-555.
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Dementia is a progressive disorder of the mental process caused by brain disease or injury and marked by memory disorders, personality changes and impaired reasoning (McDonnell, 2013). According to Alzheimer’s Society (2007), there are currently an estimated 683,597 people with dementia in the UK (Alzheimer’s Society, 2007). The aim of this essay is to analyse the spectrum of needs in relation to older people diagnosed with dementia and to evaluate the implications for professionals working with this service user group. Dementia cases are increasing with the ageing population, thus, making it a priority for health, local authorities, private and voluntary organisations (Alzheimer’s Society, 2007). This essay will define the key terms: needs, want and person-centred care. Next, the needs of older people with dementia will be analysed using some needs theories; and the implications for professionals evaluated. This follows an exploration of the strengths and limitations of service user provision.

In the context of this essay, ‘needs’ are services/resources a patient or a family carer have to have, while ‘wants’ are services/resources they would like to have. In nursing and medical care, needs typically emerge from ill health, trauma, disease or other health-related life events with an emphasis on prevention, treatment or some form of management (Cameron, 2006). Needs are often evaluated by professionals using different factors which includes: biomedical measures of health status, self-report, health status indicators and geographical variations (Anderson, 2008).

Each dementia patient is different with varying needs, preferences, life history and experiences (Doerr, 2015). To meet their specific needs and develop them to become independent, their support ought to be person-centred (Alzheimer’s Society, 2015a). A person-centred care is a care that recognises a service user’s individuality and personal history, and understanding the world from their perspective (Cameron, 2006). ‘National Dementia Strategy’, published by the Department of Health (2009), advocates for person-centred care at the forefront of a campaign to help people living with dementia to lead a good quality life. By forming a therapeutic relationship with the person, being compassionate and a non-judgemental approach will help develop this strategy further (National Institute for Health and Care Excellence (NICE), 2013).

The spectrum of ‘needs’ with regards to dementia is evaluated with references to Maslow’s, Bradshaw’s and Dean’s needs. Services should be geared towards meeting these needs, as social problems are the results of these needs not being met. Various professionals from the healthcare, social care, and voluntary services are typically involved with dementia patients. Professionals may include social workers, general practitioners, dieticians, district nurses, physiotherapists, speech and language therapists, and occupational therapists.

Voluntary organisations provide different innovative services for dementia patients and carers. They benefit the public in ways the law says is charitable (NCVO, 2017). They make provisions for advocacy, self-help, information, and training across all parts of the UK. For instance, the Alzheimer’s Society: provides helpline and support for carers, runs quality day and home care, funds medical and scientific research and gives financial assistance to families in need (Alzheimer’s Society, 2017). Dementia Voice: in partnership with Housing 21, is responsible for the management and development of specialist care provision, research, and training (Blood and Bamford, 2010).

Voluntary settings can be influenced in many ways by policies, legislation, service provisions, and funding. An estimated £11.7bn is contributed by the sector to the UK ‘gross value added’ yearly, however, at the start of 2010, 59% of charities were affected by the recession (National Council for Voluntary Organisations, NCVO (2017)). During each quarter of 2011, most reported a worsened financial situation over the previous year (NCVO, 2017). Recently, the sector experienced an increased demand for services, rising costs, and an unusual fall in income, still, with the understanding that their income is reducing, the sector has expanded levels of service provision (NCVO, 2017).

Maslow’s first stage (physiological and biological needs) and second stage (safety needs) relates to a dementia patient’s ability to shelter himself, eat/drink, wash-up/dress-up, feel safe and many more to adjust to the change in behaviours and cognitive abilities (Doerr, 2015). The Care Standards Act (2000) could be applied here. Under this act, dementia patient can get a family carer to help with washing or dressing, especially in the advanced stage when they find it difficult to do simple tasks. This legislation affects the patient care as carer must follow rules, like ensuring that patient’s privacy and self-respect is maintained. This would avoid putting him/her in a worthlessness situation. This legislation also makes sure that people with dementia are treated equally (not discriminated against) and have suitable accommodation to stay in.

Addressing the first stage (physiological and biological needs) and second stage (safety needs) should start from a good diagnosis among those with symptoms of dementia. Being aware and becoming well-informed of the diagnosis helps in substituting patients and families original fears with knowledge and understanding. This knowledge and understanding help encourage precious moments that support the patient’s ability to feel safer and more comfortable (Bakker et al., 2010).

The best professional intervention in addressing the biological and physiological ‘needs’ are Cognitive Behavioural Therapy (CBT) and family systems model. They help dementia patients improve their day by day wellbeing by taking care of their social, physical and emotional health (Alzheimer’s Society, 2007). As dementia patients experience an unexpected change in environment, CBT can help in dealing with issues of daily wellbeing (Adams and McClendon, 2006). Another intervention that can be of help when providing support with Maslow’s first stage (physiological and biological needs) and second stage (safety needs) is the family systems model. With the help of this model, professionals will develop an understanding of the family dynamics, thus, providing them with information on what the support system is like along with resources needed to be of assistance to best help the family (Roach et al., 2014).

The ‘belongingness and love needs’ of Maslow’s hierarchy relates to a dementia patient’s ability to love, feel affection, friendship and intimacy. This could be in their relationships with their partners, friends, work groups and family systems. The interventions that can be used to help with Maslow’s love and belongingness needs are community intervention, music therapy, dance therapy, art therapy, group work and family systems model (Roberston et al., 2013). An individual’s quality of life can result in a positive psychological well-being through improvement from dance, music, and art therapy (Tay et al., 2014). A good psychological care should involve people with dementia attending training and interventions as ‘experts by experience’ (The British Psychological Society, 2016). However, this is not always the case, especially in complex dementia where service users are incapable of making decisions.

Maslow’s (1943) ‘esteem needs’ relates to dementia patient’s ability to feel purpose, recognition, achievement, freedom, authority, prestige, self-respect, and respect from others (Doerr, 2015). This could be the feeling of worthlessness in life after being diagnosed with dementia and the feeling of being a burden on others. The best professional interventions to address the patient’s ability to gain self-esteem are CBT, grief facilitation, and some group work (Adams and McClendon, 2006).

Bradshaw (1972), identified needs in four categories: normative need, comparative need, felt need and expressed need. The normative need is represented by service users who fall below a set standard (McWalter et al. 1994); the comparative need is characterised by groups, not in receipt of a service where two similar groups are compared for access to service; the felt need is represented by the need which service users feel; and the expressed need or demand is usually described as felt need in action (Bradshaw et al., 2013).

Not all needs can be expressed or demanded. Considering that most service users requiring social services are often those not capable of taking decisions, they do not often voice their demands. Needs could also not be expressed for cultural reasons. This is clearly evident in black and minority ethnic carers of people with dementia, where giving care is considered a natural thing to do, this can mean that carers do not ask for professional help as this might be considered a failure on their part to carry out their caring duties (Social Care Institute for Excellence, SCIE (2013)). It is also normally taken by policymakers that ‘no demand’ means ‘no need’. (Bradshaw et al., 2013).

Although Bradshaw’s (1972) ‘felt needs’ could be equated to what service users ‘want’, but it is deemed an inadequate measure of real need, as misjudgement could happen in the process which may be favourable or unfavourable to service users (Bradshaw et al., 2013). Hence, it is not a true measure of need, since it is limited by the perceptions of the individual (Cameron, 2006). This is clearly the case in profound dementia, where service user may be unable to express his/her ‘felt needs’. He/she is unable to accurately perceive needs, so may not recognise his/her need for 24-hour support (McWalter et al., 1994). When this happens, it becomes up to the professionals to apply relevant policies and legislation.

The Mental Capacity Act (2005) may be applied here. This legislation makes provision for service users to be looked after by carers in the day or be in full-time care, where they will be looked after 24 hours a day. The act also makes it possible for their finances to be taken over if they do not understand it. It equally makes sure they cannot be judged by people for their mental health issues. SCIE (2015), recognises that a social worker may need to decide if a service user can make a decision between staying at home or moving to a care home. Despite the legal obligations on care providers to involve service users as set out in the Mental Capacity Act (2005), over a quarter were still not involved in decisions about their care (Alzheimer’s Society, 2015b).

Dean (2010), argued there cannot be one true meaning of a word like ‘need’. He identified needs in four categories as inherent needs, interpreted needs, thin needs and thick needs. Dean developed a fourfold taxonomy of need and each resulting quadrant gives rise to a different social policy approach (Citizen’s Income Trust, 2011). Like Maslow’s hierarchy of needs, Dean’s needs implies that service user’s humanity depends on social engagement and self-fulfilment. The implication to professionals is in its universal and unconditional approaches to social policy (Citizen’s Income Trust, 2011).

There is no doubt difficulties are encountered with the definition of need theories. Maslow, Bradshaw, and Dean considered what ‘needs’ are and how we can think about them in different ways. Bradshaw four stages of needs and Dean’s fourfold taxonomy of need presented a different explanation of needs. Contrary to Maslow’s needs definition, Bradshaw’s approach is more flexible and shows that different definition of needs is necessary for different groups (Robinson and Elkan, 1996). Unlike Maslow and Dean, Bradshaw maintained that ‘needs’ are equated to ‘real needs’ if all four ‘needs’ are present (Bradshaw et al., 2013). As argued in Fleming (2012), not all ‘needs’ described by Maslow are applicable to everyone, since not every individual has a need to belong. Fleming (2012), also suggested an individual’s action may be in reaction to some other needs at one time.

With regards to dementia, the ‘needs’ identified by Maslow, Bradshaw, and Dean may not all be met because most service users cannot communicate their needs. Family and professional carers may also have difficulty recognising their feelings as they may not understand they are bitter, in pain, ill, starving, thirsty, hot or cold. Consequently, their needs stay unfulfilled and unmet. The weakness in the current policy response to the service user group and their carers would result in an extended unmet needs by the health care and social services (Alzheimer’s Society 2007). As an implication, there will be deterioration in their health. Also, the Mental Capacity Act (2005), affects patient’s care because it allows them to make their own decisions, for instance, if they do not want to go into a care home or take medication. The legislation makes sure they have the freedom to make decisions on their own. NICE (2016) stipulates healthcare professionals (HCP) should take person’s choice and preferences into account and consider family member’s information to provide Person-centred care.

Continuing participation of service user is encouraged in dementia as they are underrepresented in participation processes. ‘Service user participation’ is the process of involving a current or previous service user in the planning, development, and delivery of that service (NHS England, 2015). Service user involvement matters because NHS England (2015) recognises that service user direct experiences of using services, makes them have a unique insight into what works, which can be used to improve services. Key policies and legislation have made service user involvement in the UK healthcare and social care services a statutory duty. These include The Children Act (1989) and the Community Care Act (1990). Although there are professional mandates to promote equal opportunities, respecting diversity, different cultures and values, however, for service user’s involvement to be successful, the imbalance of power between providers and service users must be reduced (Braye, 2000).

In conclusion, this essay successfully identified and analysed the variety of needs in relation to old people with dementia, and it clearly evaluated the implications for professionals working with them.

The aim of the literature review is to explore how music therapy impacts the behaviour of elderly people with dementia experiencing agitation. The term ‘dementia’ describes a set of symptoms that may include memory loss, mood and behaviour changes, reasoning and language (Alzheimer Society, 2015). These symptoms occur when the brain is damaged by certain diseases, such as Alzheimer’s disease or other neurological conditions such as Parkinson’s disease. Dementia causes significant difficulties to individuals, reducing their ability to perform their daily living activities effectively and to rely on carers for help with their care as symptoms get worse (Alzheimer Society, 2015). Mosby (2009) defines agitation as a state of chronic restlessness and increased psychomotor activity generally observed as an expression of emotional tension and characterized by purposeless, restless activity.

Pharmacological interventions have limited benefits in the behavioural symptoms of dementia (Ballard et al, 2009) which presents a potential role of non-pharmacological interventions for example, music therapy that have been proposed and developed for people with dementia (Douglas et al., 2004; Graig, 2014). According to Alzheimer’s Society, (2015), the United Kingdom had 850,000 people estimated to have been diagnosed as having some form of dementia: a figure which represented that 1 in every 14 people over the age of 65 years had dementia and is forecasting that the number of people with dementia will increase to over 1 million by 2025 and over 2 million by 2051.

The Department of Health (DH) (2009) highlighted a need for further research to investigate the clinical and cost-effectiveness of non-pharmacological methods such as music to actively support elderly dementia patients. In line with this, music therapy was recommended as a psychosocial intervention in the United Kingdom National Dementia Strategy (DH, 2009). In March 2012, the Prime Minister launched a challenge on dementia – “Dementia 2012: A national challenge”, with one of key areas being driving improvements in health and care – including better diagnosis; improving care in hospitals; improving standards in care homes; more information for patients and families; and more support for carers. This was reinforced by “Prime Minister’s dementia challenge 2020” (DH, 2015) which focused on boosting research, improving care and raising public awareness about the condition in England. According to Alzheimer’s society (2015) there is more that can be done to lessen symptoms of agitation, confusion and depression in dementia patients. There is, therefore, a need to develop strategies specifically for dementia in order to meet the Darzi report (Saad et al, 2008) and National Dementia Strategy (DH, 2009) goals of supporting and improving care for dementia patients who are admitted to hospitals.

Music therapy is ‘a research-based practice and profession in which music is used to actively support people as they strive to improve their health, functioning and well-being’ (Australian Music Therapy Association, 2013). American Musical Therapy Association, (2009) stated that music therapy interventions can be designed to promote wellness, manage stress, alleviate pain, express feelings, enhance memory, improve communication and promote physical rehabilitation.

1.2 Search strategy

A comprehensive literature search using EBSCOHOST data base was conducted to collect past pertinent research of dementia and music therapy. Specific databases included in this search were; Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature On-Line (MEDLINE), Psychological Information Database (PsycINFO) and Google scholar search engine. Keywords used to find articles for review are dementia, elderly people, music therapy, intervention and agitation. A keyword is a word or a phrase typically a phrase of two or three words which are typed into a search engine which enables the computer to find information when researching. Keywords point researchers to relevant papers (Joshi, 2014). The initial search yielded 74 potentially relevant articles (Appendix 1). Studies were included if they were published in English Language, peer reviewed and with publication dates from 2013 to 2018 to ensure that the most recent evidence is used. No restrictions were applied on where the studies were conducted to capture all relevant evidence. Additionally, hand searches of reference lists of potential articles retrieved were examined to identify articles not captured through search strategy (n = 5). A total of 2 research articles handpicked relating to dementia and music therapy were retrieved and included with years 2009 and 2010 as they were relevant to this review. Total number of articles included in this review was five which fitted with the research question and reported that music therapy helped in the behaviour of older people with dementia positively in reducing levels of agitation (Appendix 2).

The following themes emerged from the literature: (Appendix 3)

1.3. Theme 1

The study by Wang, Yu and Chang (2015) used quasi-experimental longitudinal research design with two groups of subjects. The experimental group had 90 participants and 56 comparison group. The results of the study show that after music therapy was administered memory and behavioural problems improved, as well as the depressive mood status changed. The residents engaged with music even when their cognitive functions had deteriorated. The stimulating effect of music, how playing instruments and listening to music instantly caught the attention of many residents who frequently appeared less aware or disinterested in other people or activities around them thereby responding by feet tapping, hand clapping, whistling, singing along or dancing. Alves et al., 2016 study reinforced the above that music therapy taken with standard care helped elderly people to maintain intellectual function as well as levels of depression, health problems and anxiety. Six weeks of music therapy according to Ridder et al, (2013), significantly reduced average agitation disruptiveness scores in persons with dementia compared to standard care and prescription of psychotropic medications were not increased when music therapy was administered. Cooke et al (2010) study was a randomised cross-over design study with music and reading control group, where 47 participants with mild to moderate dementia attended a 40 minutes live group music programme. Their findings were that music did not significantly affect agitation and anxiety, but it gave some participants a voice and increased their verbalisation behaviour.

1.4. Theme 2

Park and Specht (2009) conducted a pilot study with fifteen individuals with dementia in their homes for four weeks. The participants listened to their preferred music for 30 minutes twice per week, followed by two weeks without music. Their results showed that the mean agitation levels of individuals were significantly lower while and after listening to preferred music than before listening to the music. The above these was reinforced by Ballard et al, (2009) study that presented that there was a reduction in aggressive behaviour in some elderly people with dementia as a result of relaxing music. However, for some residents according to patient’s relatives who were present when music therapy was conduct, the good/nice mood was short-lived, but the improvement in mood still had a positive effect on the well-being of the residents, emphasizing the importance of taking the individual taste in music into account. McDermott et al, (2014) conducted a qualitative study using focus groups and interviews in a care home residents and hospital clients. Care home staff and music therapists were used. Twelve participants from care home and four from day hospital took part who had moderate to severe dementia. Six focus groups consisting of between 4 to 7 participants were conducted. The findings were that effects of music went beyond the reduction of behaviour and psychological symptoms. McDermott et al, (2014) results shows music played in daily care situations demonstrated significant lower agitation levels while listening to music than before listening to music with a positive increase in the participant’s mood and socialisation skills.

1.5. Theme 3,

McDermott et al, (2014) results highlighted how music is closely linked to personal identity and life history of the individuals which in turn improved social psychology of the care home environment. More so, music brought emotionally meaningful experience, enjoyment, stimulating opportunity for self-expressions for all residents. The shared emotional experience developed new relationships social interactions in the care home. For some residents, music has always been part of their everyday lives – they recognised familiar music which rolled their memory back of well-known songs that played a key role in their life – music that focused on personal history and life events. The residents with Christians’ background some songs reminded them of going to church and as singing hymns was part of their upbringings (Ridder et al, 2013). Music listening is an easy therapeutic activity which can be carried out with their daily tasks and according to a study by Park and Specht (2009), the peak agitation time was established to be from 08:30hrs in the morning until 20:00hrs.

1.6. Theme 4

Social activity increased according to McDermott, Orrell and Ridder. (2014(a)) as families seemed to value the social aspects of music activities in care homes. Individual with dementia have reduced ability to interpret their environment. Agitation can result when they feel anxious but cannot find the appropriate verbal or motor activity which lead to confusion and anxiety. Medications are often used to sedate and calm the patient down, but on the other hand, makes them tired, drowsy and confused. In Cooke et al, (2010) study it was established that meaningful musical experiences often resulted in experiences of emotional connectedness with other people – residents shared the challenges of living with dementia, but it was not easy to balance between individually meaningful music and more generic well-known music.

Conclusion

The purpose of the literature review was to investigate dementia and music therapy. It is evident that there are many different views within the themes, and it can be safely said that most of the views are of positive nature. Music therapy can be considered as a non-pharmacological intervention that can potentially reduce cognitive decline and improve the quality of life of dementia patients. However, patients are expected to continue with their prescribed medications as music therapy can only help with the reduction of taking more tablets. Although difficult and complex the caring and understanding of elderly people with dementia, should be the goal of the caregivers to respond in a manner wherein the interventions can improve the person’s quality of life. Music therapy has not been offered to dementia patients in the hospital settings before, this is in line with the launch of ‘Music for Dementia 2020’ in January 2019 run by the Utley Foundation – a national campaign to make music available to everyone living with the condition by 2020.

Research questions:

What are the benefits of music therapy to elderly people with dementia who are experiencing agitation?

Aim: To explore how music therapy impacts the behaviour of elderly people with dementia experiencing agitation in an acute hospital setting.

SECTION 2

Research Methodology

2.1 Introduction

In this section, the research methodology used, the area where the study is conducted, the study design and the population and sample are all described. The instruments used to collect the data are also described.

2.2 Research approach and design

There are two approaches to research namely quantitative and qualitative research. Quantitative research is used to quantify problems by creating numerical data or data that can be transformed into useful statistics (Polit and Beck, 2008). Meanwhile, qualitative research mainly is concerned with gaining insights and understanding on underlying reasons and motivations (Creswell 2013). Qualitative researchers are interested in understanding the meaning people have constructed, that is, how people make sense of their world and the experiences they have in the world. (Merriam, 2009). Quantitative approaches focuses more on the positivist tradition while qualitative is most frequently allied to naturalistic or realistic inquiry (Polit and Beck, 2008).

A qualitative research approach is appropriate for the study as the researcher aims to interpret the experiences of elderly people with dementia who are experiencing agitation. Qualitative research was chosen as it involves an interpretive, naturalistic approach to its subject matter; it attempts to make sense of, or to interpret, phenomena in terms of the meaning people bring to them (Denzin and Lincoln, 2003).

2.3 Research setting/ Study population/sampling specifications/Sample size

The study will be conducted at an acute hospital in the West Midlands. I have chosen this hospital because it has a prevalence of dementia within the in-patient population of 11% to 19% and a new model of specialist dementia programme was established in 2012, with an aim to improve the outcomes for people with dementia and their families. There is a special ward in this hospital where elderly patients with dementia are admitted with special features and colours to meet their needs. For the purpose of this study, only patients with a confirmed diagnosis of dementia documented on their hospital notes will be included. I am hoping this research will enlighten better quality of care for dementia patients in hospitals which can also be helpful when they are discharged home to preserve continuity with what is familiar to the individual. Music therapy takes one of two forms: it can be characterized as either Interactive/Active, in which participants sing, hum, move along with music or Passive/Receptive, in which participants listen to live or recorded music. The type of music therapy, however, will be dependent on the preferences of the individual as history about type of music they like will be taken from patients and their relatives and noted on their getting to know me passport (appendix 4). Patient’s preferences are consistent with patient-centered care when creating a care plan (DH, 2009). With group sessions music played will try to include everyone’s choice as this will take 30 minutes. If a patient becomes more agitated during the session, the session would have to be discontinued and reassurance given and at the same try to find out what may be the problem, from experience having looked after agitated patient, it can be a sign of the patient wanting to use the toilet, pain, hunger, thirst and tiredness.

Purposeful sampling will be used which is a non-random method of sampling where the researcher selects “information-rich” cases for study in depth (Patton, 2015). Purposeful sampling takes place when the researcher selects a sample from which the most can be learned (Merriam, 2009). It is the most common sampling strategy in qualitative research and seeks cases rich in information which can be studied in great deal about issues of central importance to the purpose of the research. The benefit is that, as Patton (2015) puts it, “Any common patterns that emerge from great variation are of particular interest and value in capturing the core experience and central, shared dimensions of a setting or phenomenon”.

I intend to recruit about 15 patients and conduct music therapy twice a day mornings and afternoons twice a week for 8 weeks. Only five chosen patients in that session will be accessed. Inclusion criteria for participants will be a documented diagnosis of moderate to severe dementia, male or female above the age of 65 years and will also target patients who have a confirmed presentation of agitated behaviour from the nursing staff and relatives. Craig (2014) revealed there is no optimum intervention length or frequency, but a minimum of 30 minutes twice a week would be recommended based on best practice. The nursing staff would be used to facilitate and support the author to conduct the music therapy interventions.

The nursing staff will also be useful in identify appropriate patients. A leaflet will be made available in the ward for patients and relatives about the study (appendix 5) and information about what music therapy involves (Appendix 6). Patient will be approached individually and/or with their relatives and the full study explained and any questions and clarifications done then informed consent form will be signed.

2.4 Data collection

I will use observational method of data collection during and after interventions: alertness, eye contact, smiles, body language, mood changes and engagement with activity (Appendix 7). I will also interview patients after these sessions are complete to find out their experiences on how music therapy is helping them. I will also be making field notes during and immediately after each therapy session as this will help in data analysis. Myers (2009) argues that the premise of interpretive researchers is that access to reality (whether given or socially constructed) is only through social constructions such as language, consciousness and shared meanings. In this study, the interviews will be recorded and transcribed immediately after the sessions.

2.5 Data analysis

An important aspect of data analysis in qualitative study is the search for meaning through direct interpretation of what is observed by the researcher as well as what is experienced and reported by the subjects. Bogdan and Biklen (2003) define qualitative data analysis as “working with the data, organizing them, breaking them into manageable units, coding them, synthesizing them, and searching for patterns”. The aim of analysis of qualitative data is to discover patterns, concepts, themes and meanings.

2.6 Results

The process of data analysis will begin with the categorization and organization of data in search of patterns, critical themes and meanings that emerge from the data. A process sometimes referred to as “open coding” (Strauss and Corbin, 1990) is commonly employed whereby the researcher identifies and tentatively names the conceptual categories into which the phenomena observed would be grouped. The goal is to create descriptive, multi-dimensional categories that provide a preliminary framework for analysis. These emerging categories are of paramount importance as qualitative researchers tend to use inductive analysis.

2.7 Discussion

The main aim of this study is to gain knowledge about the benefits of music on agitation among elderly people with dementia. The nonpharmacological approach of using music to dementia involves an array of many aspects. Firstly, it involves someone to provide the music intervention. A nurse, a music therapist or a family member can be a tool to implement this approach (McDermott, Orrell and Ridder, 2014(b)). As a nurse I will need training skills to be able to implement music in dementia care more effectively and efficiently. How to implement music intervention is also vital. When and where to implement music intervention is important, the literature highlight that music therapy caregiving can be done during morning care activities and listening to relaxing and individualized music during mealtimes.

Limitations of the results

In implementing this study, I will be recruiting a small sample size that might not be representative of the experiences of a wider group of people with dementia but a sufficient size where no new concepts are identified, some patients might not be able to complete the whole study as they might be discharged before end of study as the National Health Service (NHS) bed shortage crisis leaves hospitals struggling to cope with inpatient beds. The early discharged patients will be offered to come and complete the sessions as outpatients if they wish. Considerations will also be made on the preferences of the patients and their family members on whether they need any support to continue with music therapy at home through referrals to organization who offer these services. It should also be noted that this study is only limited to only one NHS hospital setting.

Implications to practice

Music plays an integral part of life as most people use it to express their deepest emotions. It gives us pleasure, relaxation and helps us in relieving stress and improves the mood and movement to expand health outcomes (Murrock and Higgins, 2009). Although the healing effect of music is established in many supporting professions, the mechanism behind its therapeutic effect remains unclear. Learning from the experiences of other nurses or healthcare practitioners on the use of music therapy for dementia patients would also help improve nursing practice in the UK. As I have established through the review of literature many of the patients with dementia show less agitation when exposed to music that was once relevant to them before they suffered from dementia. This suggests that music therapy could even not only promote positive mood of the patients but might even reconnect them to ‘who they are’ (McDermott, Orrell and Ridder, 2014(a)). This holds important implications in nursing practice in a hospital settings and patients’ own home. Music therapy could be introduced to families caring for a loved one with dementia and could be used to calm the patient, reconnect with their family members and create an environment that is less stressful for the individual with dementia.

Ethical considerations

The study will seek ethical approvals from the University of Wolverhampton Ethics committee, Health Research Authority and Acute Hospital Research and Development Department in West Midlands where the study will be conducted. Therefore, appropriate steps should be taken to adhere to strict ethical guidelines in order to uphold participants’ privacy, confidentiality, dignity, rights, and anonymity. The participants will be given enough information about the study and be given time to consider if they are interested to participate. When they have expressed interest and consented to be part of the research the researcher will explain the process again and ask if they have any questions and inform them that they are free to withdraw any time without giving any reason. Patient will be given identification numbers to anonymise their names and their data will be kept confidentially in locked drawer accessible to the researcher.

Conclusion

The Nursing and Midwifery Council’s (NMC, 2008) Code of Conduct stressed the importance of delivering quality evidence-based care that is patient-centred in the United Kingdom, The National Institute for Health and Clinical Excellence (NICE, 2006) and the National Collaborating Centre for Mental Health (2007) have provided evidence-based guidelines on how to care for patients with dementia. Effective ways to implement the right music on the right place and right time would make a difference to cater the need of people with dementia. People with different stages of dementia might respond differently to musical intervention. Thus, this specific area needs to be considered in some future research.

Alzheimer’s disease- an abnormal protein surrounds brain cells and another protein damages their central structure. In time brain cells gets lost and starts to die. Vascular dementia- is when nerve cells in brain doesn’t receive enough oxygen from blood the nerve cells dies. Mixed dementia- is when Alzheimer’s disease and vascular dementia is together. Lewy bodies- is when a little clump of protein develops inside the brain cells, and it damages the way cells works and communicates with each other and starts to die. Causes of frontotemporal dementia- usually it is diagnosed for a younger people. When the clumps of protein damages nerve cells in the frontal and temporal lobes, makes brain cells to die. Sometimes it could be genetic trough families as well.

People with dementia can have a short-term or a long-term memory loss. Short-term is when they forget something that’s happened just recently or even straight away. Long-term is when they forget something that’s happened long time ago. Sometimes it can include communication as well. There are some examples of what my clients meets every day: forgetting day-to-day events, day, month or time of year, forgets time of day, sometimes they forgets if they were eating or drinking, forgets how to do a personal care and why they need it, might repeat the same question or quotes over and over again, sometimes they can struggle to remember their family members, their names, where they keep things, which room is which and etc. With memory impairments an individual’s behaviour can change as well, their mood might swing, as sometimes they can’t recognise people, they might get scared. But there are people, who can remember what happened long time ago, and repeat the words and situations from that day.

Always make sure that speaking clearly and slowly, that there is no distractions, such as: tv or radio on. As sometimes for an individual that has a dementia is harder to concentrate, always make an eye contact, give them longer time to respond. Sometimes you need to use body language or even a physical contact when you need to show something and explain. For example, if person is hungry and wants to eat the breakfast, but recently forgot how to hold a spoon, you need to gently put the spoon into their hand, you need to show and explain how to hold it.

There is many other factors that can cause changes in an individual’s condition, that may not be attributable to dementia, such as: Urine or chest infection, Depression, side effects from medication, brain injury, stroke, lack of sleep.

All people has better and worse days, it is the same with people who has dementia. They go up and down. For example, they can go down, if they feel lonely and left alone, if medication has been changed- or it has side effects, if they experience and abuse, if has chest or urine infection, or any other illnesses, also if always has different people visiting them. But sometimes they can have better days, for example: if they feel safe, receives the right treatment, if they see their loved ones regular, if they see the same carers, or if they do activities that they enjoy.

It is very important that dementia is diagnosed as early as possible, as an individual and its family can get prepared for it, receive all information, plan their treatment, their care, receive the right medication. While an individual is able to make decisions by itself, can explain their wishes, help to prepare a correct care plan, and explain likes and dislikes. Can make its own financial decisions. As early it diagnosed, better it is, as people can find the ways to live with it easier, and longer as independently as they can, in their own homes.

It is very important to record possible signs or symptoms of dementia in an individual in line with agreed ways of working, as if an individual has no diagnosed dementia it can be beginning of signs and person must see a doctor before it got worse- and to receive the right treatment. Also it can have more other illnesses, such as chest or urine infection, depression, illnesses that need to be dealt with. If person already has dementia, it all needs to be recorded, as an individual might require extra support, or even has more illnesses that needs to be checked. When recording must be written, signed, dated and timed. If symptoms are seen, and left without sorting by a support worker, it can even lead to prison.

If there is any signs or symptoms of dementia we must report it to the manager, to organisations that deals with it with all records of changes, pass the information to GP, so they can do the memory test and physical examination, also they could do a blood test incase the symptoms are from something else.

Diagnosis of dementia can be very scary and upsetting for an individual, its family and friends. They all can go through five stages, such as: denial, anger, bargaining, depression and acceptance. The stages might not go in a row and might miss some of stages. Person with diagnosed dementia might think what would be done to avoid this or even feel guilty. Family might feel exactly the same, they might feel guilty, that they haven’t noticed it before, they might feel low and sad, as they don’t know how to help and handle this situation. They might be scared as sometimes people with dementia they forget their family members. Family needs to to give and prepare all supports for they loved one. But however, with time going people go through acceptance, and they can get all information and other help for support.

Person centred approach to dementia care, is when client is treated with respect and dignity, when an individual is placed at the centre of everything and is involved in their care planning. When the care is provided the way an individual wants, with no pressure a client feels happier and safer. But non-person-centred approaches- Is when care provided, the way that someone else thinks it is good for a patient, without listening to their wishes and needs. Basically, is more about how easier to provide a care and complete daily tasks, not involving a client. But more usually it can lead to neglect.

For example: A carer has a bed visit at 7pm, and assists person into the bed, but client gets unhappy and upset, as she didn’t leave the tv on, as she hasn’t checked a notes and person is not able to tell by himself. And after few more days patient started to be aggressive and refused to go to bed, as couldn’t explain what’s wrong. If person would be in centre of everything, they wouldn’t have this situation.

A client doesn’t like a fish and everyone is buying and heating up the meals of fish as they don’t ask, and the client don’t eat it, carers started to think that person has eating problems, but if that would be a person centred approach, an individual would eat more, as could say what he likes to eat, when choice is given. If person couldn’t speak there would be some notes in the care plan.

There is many different teqniques that can be used to meet the fluctuating abilities and needs of the individual with dementia, for example if person forgets to complete a personal care but is able to do it by itself a carer can remind it to them and assist without doing it for them. Or id person forgets what is planned for a day, always can use a calendar with small notes, for example: doctor appointments, family visits, activities. Also, if person forgets which room is which or where things are always can stick notes with titles. Most important is always to keep care plan up to date and follow it.

Lots of people thinks if person has dementia, they will lose their mind, ability to communicate, that they will forget everything, but sometimes an individual is exactly the same thinking as everyone else, but might have a little mood swings, or forgets some of the things and etc. Myths and stereotypes may affect an individual by making their life harder. For example: if family, friends or carers will think that an individual don’t understand, or will forget they might treat an individual with neglect. For carers people might say how you can deal with people that has dementia, they are aggressive, they mood is changing all the time and its very unsafe. But most of the people with dementia they are nice and friendly, and it doesn’t mean that if you have dementia you are aggressive. People with dementia is the same people that we all are. So, it can affect everyone, an individual, carers, families. if there wouldn’t be so many myths and stereotypes, maybe we would have more carers helping people.

There is many ways that individuals, families and carers can be supported to overcome their fears, such as: books, leaflets, internet websites, but it must be up to date. Also, families and individuals can get a support from GP, medical centres. If an individual is not able to complete daily tasks, can get a full support from domiciliary care companies. Carers can get support from manager, or by completing trainings up to date.

Causes of frontotemporal dementia- usually it is diagnosed for a younger people. When the clumps of protein damages nerve cells in the frontal and temporal lobes, makes brain cells to die. Sometimes it could be genetic trough families as well.