Briefing: Who cares? The state of dementia care in Scotland

Background Information

Dementia

5.4 million people in the European Union (EU) and 64,000 people in Scotland currently have dementia, making it a major public health issue for the 21st century. (Ref 1). Alzheimer’s disease (AD) is the most common form of dementia, accounting for over 60% of all dementia cases, and affecting one in 20 people over the age of 65, and 1 in 5 people over the age of 85. (Ref 2). These figures are predicted to double in Western Europe and treble in Eastern Europe by 2040. (Ref 3).

People with AD become dependent on others as the disease progresses, and beside most individuals with dementia is a carer, who may have given up paid employment, leisure activities and a normal daily life, to look after their loved one. The impact on carers’ lives is enormous, but generally overlooked by health services and policy makers. (Ref 4).

The Survey

Alzheimer’s associations across Europe, including Alzheimer Scotland, have conducted a survey amongst 1,181 carers’ to explore their experiences in caring for a loved one with dementia. The survey was designed to assess the management of different aspects of caring, such as the first diagnosis (referral patterns, timescales, information sources), the current situation (coping with problematic symptoms, areas of difficulty, available services), and current treatment practices from diagnosis onwards. The survey identifies the level of dissatisfaction of carers of the services and current management practices available. (Ref 4).

Questionnaires were distributed to a sample of carers belonging to Alzheimer Europe member associations in France, Germany, Poland, Scotland and Spain. 1,181 completed questionnaires were received from the countries, with 334 received by Alzheimer Scotland. Fieldwork was conducted from November 2005 – January 2006. (Ref 4)

Alzheimer Europe and Lundbeck partnered to develop the Dementia Carers’ Survey.

The Scottish Carers

More than half (59%) of the respondents were caring for their spouse or partner and one third were caring for a parent, the majority (60%) for people with Alzheimer’s disease. In almost three-quarters of cases (72%), the carer was living with the patient. (Ref 4).

Most patients (86%) were over 65 years old and 50% had moderate to severe dementia. 81% of carers of people with late stage dementia spent more than 10 hours every day looking after their loved one. (Ref 4).

Over half (56%) of all the carers were retired and only 13% were in full-time employment. 70% of carers were female, and carers were from a broad age range (the largest age group, accounting for 30% of respondents, was 55-64 years). (Ref 4).

The Dementia Carers’ Survey – Scottish Results

First Diagnosis

Difficulties in performing activities of daily living (92%) and behavioural disturbances (81%) were stated as reasons for seeking professional help nearly as often as difficulties in cognition (94%). Of these areas of difficulty, the most problematic symptoms stated (in order of decreasing importance) were; finding belongings, using the telephone, financial activities, cooking and shopping, in activities of daily living; social withdrawal, personality changes, depression, irritability and agitation/aggression, in behaviour; memory/confusion, concentration/attention, recognising people and getting lost, in cognition. (Ref 5).

At diagnosis, the survey revealed only limited provision of information to carers. 16% reported they had received inadequate information on the disease and 35% reported they had received inadequate information on progression of the disease. Only 37% were informed of services available to them and 65% did not receive information on drug treatments available. (Refs 4 & 5).

Carers highlighted a need for more information in all of these areas, as well as information on legal rights and issues, and how to plan for the future. In particular, almost half (47%) of carers wanted more practical information on help and services, and 32% wanted more medical information. (Ref 5).

Current Condition

Half of all respondents were caring for someone with moderate to severe dementia. (Ref 5). In Alzheimer’s disease, the moderate to severe stages are when symptoms become more pronounced and most diagnosed patients are estimated to be within these stages of the disease. Many people with mild AD can live alone and function fairly well and therefore may not have sought medical help or been correctly diagnosed. (Refs 6 & 7).

The symptoms of dementia, including activities of daily living, cognition, behaviour and communication (following conversation, reading, writing, understanding language, speaking) were all very common, reported by 99%, 98%, 91%, and 90% of carers respectively. Carers found that they were required to take responsibility for everyday tasks and household chores, such as cleaning, washing and cooking. (Ref 4).

The most difficult symptoms to cope with for carers were difficulties in performing daily activities, reported by 71% of respondents (especially being left alone, showering/bathing, finding belongings and incontinence). Behavioural symptoms were reported as the most problematic to cope with by more than half (54%) of respondents (especially agitation/aggression, personality changes, sleeping and wandering). (Ref 4). Behavioural disturbances are most distressing for carers and some studies indicate that within the first year of diagnosis, up to 70% of people with dementia experience agitation and/or irritability. By the end of the second year, symptoms of aggression will appear in up to 40% of cases. (Ref 8).

Evaluation of Services

The Dementia Carers’ Survey has highlighted a severe lack of basic support services for carers. Key services such as day care, home support or residential/nursing homes are not available to many carers (30%, 50% and 76% respectively). (Ref 4).

Similarly low figures were reported for the availability for information and emotional support (39%), mutual or peer group support (36%), training for carers (28%), counselling (24%), hospital care (12%) and hospice care (7%). (Ref 5)

More than half (56%) of carers believed that care of the elderly is a public matter and 57% believed that healthcare and services should be funded publicly, however, many carers pay for these services themselves; 69% pay for residential/nursing home care, 47% pay for day care and 34% pay for home support. (Ref 4).

Overall, less than a third (30%) of carers felt that the level of care for the elderly was good in Scotland. (Ref 4).

The Future for Dementia Carers

The Alzheimer associations participating in the survey, including Alzheimer Scotland, call on national governments in the EU to develop national plans for dementia that include ensuring that carers, who want to continue caring for their loved ones, receive the help and support they need.

National plans should include:

• Provision of comprehensive information for carers on dementia, its treatment and relevant support services, when the person they care for is diagnosed
• Systematic information at the time of diagnosis about the existence of Alzheimer’s associations and the services they provide to carers and people with dementia
• Support for Alzheimer’s associations and the essential services they provide
• Access to services and treatments that help address behavioural and functional problems in addition to cognitive symptoms
• Development of comprehensive and flexible services adapted to the changing needs of people with dementia
• Provision of appropriate training to equip carers to carry out their caring role.

For more information:
Alzheimer Scotland – Action on Dementia
22 Drumsheugh Gardens
Edinburgh
EH3 7RN
Tel: +44 (0)131-243 14 53
Fax: +44 (0)131-243 14 50
E-mail: alzheimer@alzscot.org
Website:www.alzscot.org

Alzheimer Europe
145, route de Thionville
L-2611 Luxembourg
Tel.: +352-29 79 70
Fax: +352-29 79 72
E-mail: info@alzheimer-europe.org
Website: www.alzheimer-europe.org

References

Ref 1: Alzheimer Europe calculated the numbers of people living with dementia by using the EURODEM prevalence rates [Hofman A. et al, The prevalence of dementia in Europe: a collaborative study of 1980-1990 findings. International Journal of Epidemiology 1991; 20; 3: 736-748] and combining them with the population statistics provided by Eurostat (the official statistics office of the European Union)
Ref 2: Warner J, Butler R. Alzheimer’s disease. Clinical Evidence 2000; 3: 419-425
Ref 3: Ferri CP, Prince M, Brayne C et al. Global prevalence of dementia: a Delphi consensus study. Lancet 2005 Dec 17;366(9503):2112-7
Ref 4: Georges J. Alzheimer’s disease in real life – the dementia carer’s survey. Poster presented at EFNS, September, 2006
Ref 5: Alzheimer Europe. Who cares? The state of dementia care in Europe. Luxembourg. 2006
Ref 6: Morpace Pharma Group, 2001
Ref 7: Alzheimer’s Association. Available at: http://www.alz.org/aboutAD/Stages.asp. Accessed on 1st November 2005
Ref 8: Jost BC, Grossberg GT. The evolution of psychiatric symptoms in Alzheimer's disease: a natural history study. J Am Geriatr Soc 1996;44(9):1078-81