Basket | Login | Register

 
 
 
 

2006: Dementia Carers' Survey

Completed AE projects

Introduction

On 21 September 2006, in order to celebrate the World Alzheimer Day, Alzheimer Europe published a pan-European report: "Who cares? The state of dementia care in Europe", which highlights serious gaps in dementia care.

The Dementia Carers' Survey and Report were developed in collaboration with H. Lundbeck A.S..

The survey was carried out by our member organisations in France, Germany, Poland, Spain and Scotland.

Executive Summary

Written by Jean Georges, Executive Director of Alzheimer Europe, on behalf of all the partipating associations.

Europe's carers condemn serious gaps in dementia care

Dementia is a major public health issue for the 21st century. 5.4 million people in the EU currently have dementia [1] and one in every 20 people over the age of 65 have Alzheimer’s disease ( AD ), the most common form of dementia[2]. The demographic timebomb of the aging population means that these numbers are predicted to double in Western Europe and treble in Eastern Europe by 2040[3]. But the real number of people affected by dementia is much larger than these statistics suggest. Beside most individuals with dementia is a carer – a wife, husband, daughter, son or other relative – who may have given up paid employment, leisure activities and a normal daily life to look after their loved one. This effectively doubles the numbers affected. The impact on carers’ lives is enormous but generally overlooked by health services and policy makers who give little recognition to the vast amounts they save through dementia care being provided free-of-charge. In an initiative to explore the impact of dementia on carers, Alzheimer’s associations around Europe have given carers a voice by surveying more than 1000 people caring for someone with dementia. The results paint a shocking picture of the level of commitment required from carers. Half were caring for the person with dementia for more than 10 hours each day and, unlike paid employment, there are no weekends off and no holidays – they provide care for 365 days each year.

The survey also revealed some misconceptions about dementia that may influence service and treatment provision. It is commonly thought that cognitive problems – difficulties with memory and thinking – are the major issue in dementia. But the survey showed that carers found that difficulties in performing daily activities, such as using the lavatory and washing, and behavioural symptoms are the most problematic to cope with, and they were the reason for seeking help in just as many cases as cognitive problems. Behavioural symptoms such as aggression and personality changes, which often cause a loved one to behave completely out of character, are especially distressing for carers. AD is classified as mild, moderate or severe. The majority of people are diagnosed in the moderate to severe stages , when symptoms become more pronounced. AD is associated with a decline in brain function over time and patients have an average life expectancy of 7-10 years after diagnosis [2].

The survey uncovered an appalling lack of information provision to dementia carers at the time of diagnosis. Half reported that they had received inadequate information on dementia when the person they cared for was diagnosed, four out of five wanted more information on help and services and nearly half wanted more information on drug treatments. Many carers lack basic support services to help them cope in their caring role. The survey revealed that more than half do not have access to services such as home care, day care or residential/nursing home care, and when these services are available, many carers have to pay for them out of their own pockets.

Overall, only 17% of carers consider that the level of care for the elderly in their country is good. This situation has to change. Dementia carers want to continue caring for their loved ones, but they need better information and support. The Alzheimer’s organisations taking part in the Carers’ Survey call on national governments in EU countries to developnational plans for dementiathat include ensuring thatcarers receive the help and support they need.These 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 associations and the essential services they provide
  • Access to services and treatments that help address behavioural and functional problems as well as 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

It is time for action to address these important issues.

Key facts

Dementia is a common and growing problem, placing a heavy burden on carers, healthcare systems and societies [8][9]

AD is classified as mild, moderate or severe. The majority of people are diagnosed and treated in the moderate to severe stages, when symptoms become more pronounced.10 AD is associated with a decline in brain function over time and patients have an average life expectancy of 7-10 years after diagnosis[2].

The impact of dementia

Recent statistics indicate that 5.4 million people have dementia in the EU1. This is set to increase with the ageing population, with a doubling of this figure predicted by 2040 in Western Europe and a trebling in Eastern Europe[3].AD is the most common form of dementia, accounting for over 60% of all dementia cases[2].Studies show that 1 in 20 of people over 65, and 1 in 5 of people over 85, have AD[2].

The impact on the patient

AD can have a catastrophic impact. As the disease progresses patients change from being healthy, autonomous members of society to being completely dependent on others, both physically and mentally. AD is much more than loss of memory. It is a progressive neurodegenerative disease, causing deterioration in all areas of mental ability, accompanied by changes in behaviour and personality[4].

Symptoms of AD include inability to perform previously routine and daily tasks (function), impaired memory (cognition), difficulty with language, including remembering or finding words (communication), as well as personality and mood changes such as agitation and aggression (behaviour)[4].

Disturbances in behaviour are especially troublesome. They most commonly occur in the moderate and severe stages of the disease and often result in patients moving from home care to a nursing home[11][12][13].Within the first year of diagnosis, up to 70% of patients can experience agitation and/or irritability[14].

The impact on the carer

Between 50% and 80% of patients with AD are cared for at home, according to figures from Europe and Canada[5][6].

This data is consistent with the results of this survey, which found that 84% of patients were cared for at home.

People with AD lose the ability to carry out routine daily activities including dressing, undressing, using the lavatory, travelling and handling money. As a result, many require a high level of care[15].This is often provided by an elderly relative, whose own health and quality of life are likely to be seriously affected by the burden of care provision[16].

Carers show considerable psychological and physical illness compared to agematched controls, with higher levels of anxiety and depression. A survey by the UK Alzheimer’s Society indicated that nearly 60% of carers reported suffering ill health or nervous problems as a result of direct caring[16].Further research has shown that up to half of caregivers become depressed[17].

In this survey almost half of carers spent more than 10 hours per day caring for someone with dementia. As the patient’s function deteriorates, the burden on caregivers increases[7].

Caring for someone with AD is costly financially, including:

  • lost earnings for carers or the person with dementia
  • extra medical and care costs

In some European countries, AD care takes approximately 10-25% of a family’s average net annual income[18].

The benefits of treatment

Although AD is progressive and irreversible, clinical data has shown that pharmacological treatment has a beneficial effect on Alzheimer’s symptoms. In this way, it can improve health-related quality of life for patients and carers[19][20].

Non-pharmacological treatments include mental and physical exercise and a number of other therapies such as social support and increasing assistance with day-to-day activities. Of particular importance are: information and education, carer support groups, community dementia teams; home nursing and personal care, community services such as meals-on-wheels, sitter services, day centres, respite care and care homes[21].

Results

Carers face significant gaps in the information, help and support they receive and only 17% considered that the level of care for the elderly in their country was good. So what is needed?

Information

  • Half of carers reported that they had received inadequate information on dementia when the person they cared for was diagnosed
  • Two thirds were given no information on disease progression
  • Three out of five were not informed about the existence of an Alzheimer’s association
  • Half received no information on drug treatments
  • Four out of five received no information on services available.

Appreciation of the impact of behavioural and functional problems

  • Behavioural problems (such as social withdrawal, personality changes and irritability) and problems with activities of daily living (such as showering or bathing) were very common in people with dementia, reported by 89% and 96% of carers respectively. They were reported as frequently as cognitive symptoms (memory problems).
  • Carers found behavioural symptoms (especially agitation, aggression and personality changes) and difficulties in performing daily activities (particularly showering or bathing, being left alone and incontinence) the most problematic to cope with.

Key services

  • Key services are not available to the majority of carers. Over half of carers do not have access to services such as home care, day care or residential/nursing home care. The minority of carers who do have access to these services make use of them.
  • Half of carers of people with late stage dementia spend more than 10 hours each day caring.
  • More than one-third of carers for middle stage patients and one-fifth of those caring for early stage patients devote similar proportions of time to caring.
  • Only 17% of carers considered that the level of care for the elderly in their country was good.

Funding for key services

  • When services are available, most carers have to pay for them themselves
  • Two-thirds pay for home care
  • Half pay for day care
  • More than three-quarters pay for residential/nursing home care

Note: where totals are greater than 100%, this reflects funding from more than one source.

Call for action

Dementia carers want to keep on caring for their loved ones, but they need information and support to help them achieve this. It is time for action – to include carers in national plans and services for the management of dementia .

The Alzheimer’s organisations taking part in the Carers’ Survey call on national governments in EU countries to develop national plans for dementia that include ensuring that carers receive the help and support they need.

These 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 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.

References

  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)
  2. Warner J, Butler R. Alzheimer’s disease. Clinical Evidence 2000; 3: 419-425
  3. Ferri CP et al. Global prevalence of dementia: a Delphi consensus study. Lancet 2005; 336: 2112-17
  4. Richards SS, Hendrie HC. Diagnosis, Management and Treatment of Alzheimer’s Disease. Arch Intern Med 1999; 159: 789-798
  5. Johnson N, Davis T et al. The Epidemic of Alzheimer’s Disease. Pharmacoeconomics 2000; 18: 215-223
  6. Bosanquet N, Huttin C, Kurz A et al. Alzheimer’s disease: an international perspective on care delivery. Health Policy Review. No. 11. London: Imperial College of Science, Technology and Medicine, University of London, 1997
  7. Lovestone and Gauthier. Management of Dementia. Martin Dunitz Ltd, 2001
  8. Rimmer E, Stave C, Sganga A, O’Connell B. Implications of the Facing Dementia Survey for policy makers and third party organisations across Europe. Int J Clin Pract Suppl 2005; 146:34-8
  9. Riggs JE. The aging population: implications for the burden of neurologic disease. Neurol Clin 1998; 16; 3: 555-60
  10. Tariot PN. Contemporary issues in the treatment of Alzheimer’s disease: tangible benefits of current therapies. J. Clin Psychiatry 2006; 67 suppl 3: 15-22
  11. Gauthier S, Wirth Y, Mobius HJ. Effects of memantine on behavioural symptoms in Alzheimer’s disease patients: an analysis of the Neuropsychiatric Inventory (NPI) data of two randomised, controlled studies. Int J of Geriatr Psychiatry 2005; 20: 459-464
  12. Alzheimer’s Disease Resource Handbook. Lundbeck
  13. Alzheimer's Disease Education & Referral Center http://www.alzheimers.org/pubs/stages.htm Accessed 1st November 2005
  14. 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
  15. Henderson AS, Jorm AF. Definition and epidemiology of dementia: a review. In: Maj M, Satorius N, eds, Dementia. London: John Wiley & Sons Ltd, 2000: 1-33
  16. Right from the Start. Alzheimer’s Society, London 1995
  17. Dunkin JJ, Anderson-Hanley C. Dementia caregiver burden: A review of the literature and guidelines for assessment and intervention. Neurology 1998; 51: S53-S60
  18. Cacabelos R, Takeda M, Winblad B. The glutamatergic system and neurodegeneration in dementia: preventive strategies in Alzheimer’s disease. International Journal of Geriatric Psychiatry 1999; 14: 3-47
  19. Birks J. Cholinesterase inhibitors for Alzheimer’s disease. Cochrane Database Syst Rev 2006 Jan 25; (1): CD005593
  20. McShane R, Areosa Sastre A, Minakaran N. Memantine for dementia. Cochrane Database Syst Rev 2006 April 19; (2):CD003154
  21. Cotter VT. Alzheimer’s disease: issues and challenges in primary care. Nurs Clin North Am 2006; 41 (1):83-93

 

 
 

Last Updated: mardi 24 avril 2012

 

 
 

Options

  • Send this page to a friend