The report highlights the large and rapidly-growing numbers of people with dementia in Scotland and the economic impact now and in the future. It provides detailed figures on numbers of people with dementia and on services, both nationally and by local authority and health board. The report sets out what strategies need to be put in place to manage or reduce the increase.

Summary

  • Dementia is a key health issue facing Scotland over the coming decades. As our population ages there is projected to be a 75% increase in the number of people with dementia.
  • The 'Dementia Epidemic' report aims to give a picture of current and future numbers of people with dementia based on the best current evidence, to outline current service provision and issues of quality and adequacy, to look at the economic impact of dementia and to set out what strategies need to be put in place to manage or mitigate the increase in numbers.
  • Dementia is a major cause of disability in people aged over 60. It contributes 11.2% of all years lived with disability, more than stroke (9%), musculoskeletal disorders (8.9%), cardiovascular disease (5%) and all forms of cancer (2.4%).
  • In order to cope effectively with the projected increase in the numbers of people with dementia and the associated cost, it is essential that Scotland has a forward-looking strategy for dementia that seeks to minimise the numbers of people developing dementia, invests in anticipatory care and support for self management, provides sufficient good quality and cost-effective services, increases resources in line with demographic growth and supports research into the causes, treatment and care of people with dementia.

Prevalence of dementia

  • This report examines the relative merits of three over-arching studies of dementia prevalence, each of which brings together and analyses data from a number of single studies.
  • All the studies agree that the prevalence of dementia increases sharply with age, although they differ on exact prevalence rates for each age group.
  • The studies providing the most detailed estimates are used to provide a range of the best current estimates of numbers of people with dementia in Scotland.

Demography

  • There are approximately 58,000 to 65,000 people with dementia in Scotland in 2007, between 1,350 and 1,650 of whom are under 65.
  • By 2031 it is projected that there will be approximately 102,000 to 114,000 people with dementia in Scotland, a 75% increase.
  • These figures underline the urgency of planning now for the coming generation of people with dementia, and of seeking ways to mitigate the impending epidemic and its impact on those with dementia, on their carers and on the provision of care services.
  • An estimated 62% of people with dementia have Alzheimer's disease, 17% have vascular dementia 11% have mixed dementias. Rarer forms include Lewy body dementia (4%), frontotemporal dementia (2%) and Parkinson’s disease dementia (2%) Between 36,000 and 40,000 people with dementia have Alzheimer’s disease.
  • 6% (3,500-4,000) of people with dementia are independent and do not need care, 11% of people with dementia (6,500-7,000) need care at some time during the week, 48% (28,000-31,000) need care daily and 34% (19,500-22,000) need constant care or supervision.
  • Around 60% of people with dementia live in the community (approximately 35,000-39,000) and 40% live in care homes or hospitals (approximately 23,000-26,000).
  • There are an estimated 228 people with dementia from BME communities in Scotland. The low number is due to fewer older people than in the general population and is predicted to rise relatively faster than for the population as a whole.
  • An estimated 4,722 deaths of people over 65 in Scotland were theoretically attributable to dementia in 2005.
  • Because the prevalence of dementia doubles every five years, and because it is an illness predominately of old age, if the onset could be delayed by five years the number of people with dementia could be approximately halved. The number of people over 65 with dementia in 2031 would then be very close to the 2007 figure.

Services for people with dementia in Scotland

  • There is an overall picture of insufficient services and great variability in provision between different areas. In many areas there is lack of provision, for example, of post-diagnostic services and of respite. On average, 11% of people with dementia living in the community receive home care and 12% receive day care, against a working target of 28%.
  • A vast amount of care for people with dementia is provided by informal carers, who compared with non-carers are more likely to take prescribed medication, visit their GP and report higher levels of stress and physical symptoms. Respite provision is a key issue for carers and people with dementia: only 27% of carers of people with dementia get a week’s short break in a year.
  • Carers report a lack of services. In a survey only 37% felt that the services available were sufficient for their needs. 30% said day care was unavailable and 50% could not access home support. Information received at the point of diagnosis was inadequate and only 28% had access to training in how to cope with their caring role.
  • Around 6,500 people are diagnosed with dementia each year. They need appropriate post-diagnostic services including training and support for self-management. At present there are no self-management courses for people with dementia and only limited provision of support groups and one-to-one emotional support.
  • Improved anticipatory care and self-management for dementia are an essential part of a strategy to invest in approaches which allow people with dementia and carers to cope better and for longer in the community.
  • Free personal and nursing care has benefited people with dementia and their carers. Most people receive free personal care without delay or complication, but there remain some concerns about waiting lists and about differing interpretation of guidance on assistance with food preparation and with medication.
  • The quality of hospital care, both in specialist dementia wards and in acute wards, and the issue of delayed discharge are key concerns. On acute wards, lack of staff knowledge about dementia can mean that patients with dementia risk malnutrition or dehydration. Many dementia wards have poor environments, inadequate staffing levels at mealtimes and insufficient activities, and many staff are unaware of current dementia guidelines.
  • In 2006 there were reported to be 15,321 people with dementia in care homes in Scotland, but this may be an underestimate. Many people in care homes may have dementia but not have had a diagnosis; they are denied the opportunity to plan for the future and to access appropriate treatments.
  • The quality of services is a continuing concern, particularly the quality of care for people with dementia living in care homes. In adult services, care homes for older people gave the Care Commission “the most significant cause for concern”.

Costs of dementia in Scotland

  • The cost of dementia in Scotland in 2007 is between £1.5 and £1.7 billion. Dementia has a major impact on our economy.
  • These figures include the cost of accommodation (41% of total), informal care (ie the costs to family of caring) (36%), social work services (15%) and NHS care (8%). The estimated average cost per annum of a person with dementia is £25,472.
  • The cost of dementia in 2031 is projected to rise to £2.6 - £2.9 billion (at today’s prices).

Alzheimer Scotland makes ten recommendations for immediate action

  1. Funding for a programme of self management courses for people with dementia jointly with carers as part of a strategy of saving future costs through anticipatory care.

  2. Restoration of the availability of existing drug treatments to people with mild Alzheimer's disease.

  3. Increased funding now for services such as home care, day care and short breaks and recognition that personalised care through specialist dementia services may be more cost effective in the long term by allowing people to remain in their own home for longer.

  4. Increased future funding in line with demographic change and the increase in the number of people with dementia.

  5. Improved training in dementia care.

  6. A medical assessment for every person in a care home whom staff believe may have dementia and improved access to doctors and specialist services for care home residents.

  7. Implementation of the recommendations of the report on free personal care, and allowances uprated in line with increases in care home fees.

  8. Investment now in a major public health campaign to reduce people’s risk of developing dementia in later life, by encouraging healthy eating, physical activity, mental exercise and social stimulation.

  9. Support for research into better preventive treatments, better symptomatic treatments, causes and ways of preventing or delaying dementia.

  10. Dementia to be made a national priority.

Related content