Key learning points:
– Definition of dementia, causes and treatment
– Impact of dementia on the person with the condition and their family/carers
– Current guidelines on caring and supporting people with dementia and their family/carers
Dementia is a term for conditions that impact on the functioning of the brain. The National Dementia Strategy defined dementia as an “illnesses in which there is progressive decline in multiple areas of function, including decline in memory, reasoning, communication skills and the ability to carry out daily activities”.1
Currently there is no cure for dementia, the focus of treatment is to slow the progression of the disease and enable the person with dementia to live well. Dementia is not a normal part of ageing, but the risk of developing dementia increases in old age.2 The most prevalent form of dementia is Alzheimer’s disease, which accounts for 62% of cases. The cause of Alzheimer’s disease is referred to as plaques and tangles. Neurons within the brain develop abnormal amyloid plaques and their axons become tangled, preventing communication and eventually leading to the death of these cells.
Early signs of Alzheimer’s disease include problems with episodic memory, the loss of memory of past experiences, time and place. The disease progresses in a slow and steady nature, which is difficult to predict and is unique for each individual. Later stages include a wider disruption of a person’s functioning, reasoning, thinking, communication and visual perceptions.
Treatment for Alzheimer’s can include either acetylcholinesterase inhibitors (donepezil – trade name; aricept, rivastigmine – trade name; exelon, galantamine – trade name; reminyl) or a drug that blocks the effects of excess glutamate in the brain (memantine – trade name; ebixa). Vascular dementia is caused by an inadequate blood supply to the brain and the death of neurons. This can be caused by weakening and narrowing of the blood vessel walls from arteriosclerosis. Management of the risk factors for atherosclerosis can delay the onset of vascular dementia, these include hypertension, hyperlipidaemia, cigarette smoking, and diabetes mellitus.3
Early signs of vascular dementia include a decline in problem-solving abilities. Vascular dementia progresses in a step-wise fashion, a person’s cognitive functioning may be stable for a period of time before an acute decline. Treatment involves secondary prevention of risk factors; acetylcholinesterase inhibitors are not recommended.
Mixed type dementia includes the diagnosis of both Alzheimer’s disease and vascular dementia, this is more prevalent in older people.4 The progression of mixed type dementia is a significant, steady decline in cognitive functioning, more so than in either Alzheimer’s vascular dementia alone. Dementia with Lewy bodies is caused by the development of roundish protein bodies within cell bodies of the neurons. Unique symptoms include: a significant fluctuation in confusion and alertness, less memory loss in the early stages, hallucinations, visual difficulties, acting out dreams, and rapid eye movement sleep disorder. Treatment is dependent on the symptoms and acetylcholinesterase inhibitors may be used if distressing hallucinations or delusions are present.
Frontotemporal dementia is more common in people under the age of 65 and is caused by pathological changes in the front and temporal lobes of the brain. There are different types of frontotemporal dementia, but symptoms can include changes in personality, behaviour and speech difficulties. Treatment is also dependent on symptoms and may include antidepressant medication. Acetylcholinesterase inhibitors are not recommended as they may be harmful.
In the past, people with dementia have been prescribed antipsychotic medication for behaviours such as aggression, agitation, wandering, and sleep disturbance. The National Institute for Health and Care Excellence (NICE) has produced guidelines5 that demonstrate non-pharmacological interventions can reduce these behaviours. Therefore, the prescription of antipsychotic medication for people with dementia has fallen by 51.8% between 2008-2011.6 In some circumstances antipsychotic medication may be necessary and appropriate, but must be prescribed and reviewed according to current NICE guidelines.
How it impacts the person, their family and carers
This article has so far described dementia from a biological approach, however dementia is a biopsychosocial disease, as a person’s identity such as relationships, environment and support impact on the progression of their dementia.
A person with dementia may struggle to maintain their identity, as they may not feel confident in engaging in their traditional roles, hobbies or occupation. For example, a person may lose confidence in completing tasks such as cooking or driving, or attending social groups to play bowls or bridge. Withdrawal from social activities impacts on the person’s identity, self-esteem, independence, social roles and relationships. Therefore, it is important for families, friends and carers to support the person with dementia to continue as far as possible with social activities, what the person can achieve rather than focusing on what they can no longer achieve. Support to enable a person with dementia to continue social interactions will enhance their identity, self-esteem and independence even as the dementia progresses.7
Family members and friends commonly become informal carers (unpaid) for a person with dementia. Caring can be challenging and demanding, and both physically and mentally exhausting, leading to social isolation, increased stress, anxiety and depression. However, caring can be rewarding and strengthening for relationships, feeling empowered to care and support a loved one, learning new skills and building new networks.8 Interventions to support informal carers are available, such as providing information, online support groups, support from health and social care professionals, as well as third sector organisations such as Alzheimer’s Society, Age UK, and Carers UK.
Carers are supported through the Care Act,9 which entitles all carers to an assessment of their needs, regardless of their financial status or the level of care they provide. The needs assessment includes all aspects of caring from psychosocial to psychological distress. The assessment is regularly revisited, even following the transition of the person with dementia into residential care. Following the identification of needs, appropriate support should be provided, whether this be the practical help of services, support groups or individual therapy. Support for carers of people with dementia is essential, psychological interventions reduce the perceived burden and levels of depression and delay nursing home admissions.8
National guidelines for dementia
In the UK, the National Dementia Strategy1 and Prime Minister’s Challenge on Dementia 201210 have focused on: dementia awareness, earlier diagnosis and intervention, and higher quality of care across health and social care settings.
Dementia awareness of health and social care professionals has occurred through the mandatory training of the health and social care workforce. The Dementia Core Skills Education and Training Framework11 define dementia awareness as tier 1 training. Tier 2 and tier 3 training is applicable for practitioners working more closely with people with dementia and their carers/families.
Dementia awareness of the general public has occurred through the creation of Dementia Friends, (a person who has completed a dementia awareness session) by the Alzheimer’s Society. A wider social movement is the development of Dementia Friendly Communities (DFC) and Dementia Action Alliances (DAAs) (local communities working together to support people with dementia) Both of these initiatives were instigated by the Prime Minister's Challenge on Dementia and the Alzheimer’s Society, and are supported by organisations such as Age UK, public services, churches, superstores, banks, schools, NHS Trusts and many more.
Relevant for health and social care professionals providing care for people with dementia and their families are the NICE clinical guidelines (CG42) – Dementia: Supporting people with dementia and their carers in health and social care.12 They provide detailed recommendations, but most importantly supports the approach of person-centred care. Person-centred care focuses on caring for the person with dementia as an individual, responding to their actual needs and not assuming their needs will follow a set criteria. The provision of this care includes: knowing the person, providing meaningful activities, flexibility and continuity of care.13
NICE CG42 recommend all people with dementia, regardless of the severity of their disease, should be provided with access to interventions that are tailored to their own preferences, skills and abilities. People with dementia remain individuals and therefore may respond better to one intervention than another, and for this reason the guideline suggests a number of non-pharmacological interventions. These include: art viewing and object handling at galleries and museums, singing, storytelling at libraries and dementia cafes. These interventions have been robustly evaluated and demonstrate improvements in communication, attention, spontaneous recall of memories. Music interventions such as Singing for the Brain, developed by the Alzheimer’s Society, supports a stimulating, friendly, social environment and enables people with dementia and their carers to feel socially included, and helps their ability to accept and cope with the diagnosis of dementia.14 Additionally, listening to music has been reported to improve the mood of a person with dementia, evoke spontaneous singing, recall of old memories and reduced depressive symptoms, agitation and restlessness.15 Both listening to music and dance, and movement sessions in residential care settings have been found to support residents and staff to communicate. It also increased residents self-expression and enjoyment and led to a reduction in reports of agitation.16
Further support for people with dementia and their families/carers is provided by public libraries through a reading service and provision of memory boxes. Dementia cafes are becoming more popular and opening in many communities. These provide support and information to empower people with dementia and their family members/carers. At these cafes everyone is aware of dementia, and people can attend without having to worry or feel embarrassed for themselves or their loved ones.
Healthcare professionals can support some of these interventions, but more importantly need to be able to signpost where these forms of support can be accessed in their local communities. For example, they could support family members to consider a biographical approach of person-centred care through the recognition of an individual’s uniqueness. The completion of a short document to understand the needs, preferences, likes, dislikes and interests of a person with dementia, such as the This is Me booklet by Alzheimer’s Society, can commence this process.
The development of dementia impacts on every aspect of a person’s life and that of their families/carers, so it is important for healthcare professionals to understand and support both the person with dementia and their family members/carers. There are a wealth of services, support and activities in the community for people with dementia and their family members/carers. If you are a healthcare professional who comes in contact with people with dementia then it is essential you are able to signpost them to appropriate support.
1. Department of Health. Living well with dementia: A National Dementia Strategy, 2009. gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf (accessed 2 March 2016).
2. Prince M, Knapp M, Guerchet M, McCrone P, Prina M, Comas-Herrera A, Wittenberg R, Adelaja B, Hu B, King D, Rehill A, Salimkumar D. Dementia UK: Second Edition. Alzheimer’s Society, 2014.
3. Gorelick PP. Risk factors for Vascular Dementia and Alzheimer’s disease. Stroke 2004;35(suppl 1):2620-2622.
4. Langa KM, Foster NL, Larson EB. Mixed Dementia: Emerging concepts and therapeutic implications. JAMA 2004;292(23):2901-2908.
5. NICE. Low-dose antipsychotics in people with dementia, 2015. nice.org.uk/advice/ktt7/resources/lowdose-antipsychotics-in-people-with-dementia-1632175200709 (accessed 2 March 2016).
6. Health and Social Care Information Centre. National Dementia and Antipsychotic Prescribing Audit, 2012. hscic.gov.uk/catalogue/PUB06624/nati-deme-anti-pres-audi-summ-rep.pdf (accessed 2 March 2016).
7. Caddell LS, Clare L. The impact of dementia on self and identity: A systematic review. Clinical Psychology Review 2010;30(1):113-126.
8. Brodaty H. Donkin M. Family caregivers of people with dementia. Dialogues in Clinical Neuroscience 2009;11(2):217-228.
9. Care Act, 2014. legislation.gov.uk/ukpga/2014/23/pdfs/ukpga_20140023_en.pdf (accessed 2 March 2016).
10. Department of Health. Prime Minister’s Challenge on dementia: Delivering major improvements in dementia care and research by 2015. gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf (accessed 2 March 2016).
11. Department of Health. Dementia Core Skills Education and Training Framework, 2015. skillsforhealth.org.uk/images/projects/dementia/Dementia%20Core%20Skills%20Education%20and%20Training%20Framework.pdf (accessed 2 March 2016).
12. NICE. Dementia: supporting people with dementia and their carers in health and social care, 2006. nice.org.uk/guidance/cg42/chapter/guidance#interventions-for-cognitive-symptoms-and-maintenance-of-function-for-people-with-dementia (accessed 2 March 2016).
13. Kitwood T, Bredin K. Towards a Theory of Dementia Care: Personhood and Well-being. Ageing and Society 1992;12: 269-287.
14. Osman SE, Tischler V, Schneider J. Singing for the Brain’: A qualitative study exploring the health and well-being benefits of sining for people with dementia and their carers. Dementia, 2014 (Epub ahead of print).
15. Sarkamo T, Laitinen S, Nummien A, Kurki M, Rantanen P. Role of music leisure activities in dementia care: applicability and benefits perceived by caregivers. Journal of Communications Research 2013;5(3):331-352.
16. Rylatt P. The benefits of creative therapy for people with dementia. Nursing Standard 2012;26(33):42-47.
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