You're not alone: dementia awareness in Scotland

Executive summary

This report examines the findings of the first public opinion poll to be conducted in Scotland on the extent of public knowledge about dementia. A thousand adults, selected to reflect the population structure of Scotland, were interviewed. The survey covered: attitudes towards people with dementia; personal worries about developing the illness; views on what help is available; and the level of confidence in health and community care services for people with dementia.

The findings show

• nearly everyone recognised the terms ‘dementia’ and ‘Alzheimer’s disease’
• there was low awareness of dementia charities; only 18% were able to name Alzheimer Scotland, Scotland’s leading national charity supporting Scotland’s 59,000 people with dementia and their carers
• about a third of all respondents were worried or very worried about developing the illness; with a higher proportion amongst the older age groups
• a large majority accurately associated not only memory loss and confusion with dementia, but stress for both the person diagnosed and the family
• one in three hold misconceptions about dementia, believing that the illness is a normal part of ageing; that nothing can be done to help people with dementia; that it ‘runs in families,’ and that the majority of people with dementia live in care homes
• one in three (mainly younger people) believe that others view people with dementia as a ‘figure of fun’, but two thirds believe others view people with dementia with ‘understanding and sympathy’
• most people believe that people with dementia could be helped by better professional care, by friends and neighbours and by drug treatments
• only 16% were confident that health and community care service would be there if needed, compared to 43% who said that they were not confident. Half of those in the middle age groups (48% of those aged 35-44 and 44-54) lacked confidence that the care would be there, as did 44% of those over 65, only 18% of whom were confident
• half the sample believe that dementia is a priority for the NHS but 59% felt it should be given higher priority. Over-all, dementia was ranked in close third place after cancer and heart disease.
• These findings have wide implications for policy makers, health and community care staff and Alzheimer Scotland-Action on Dementia
• the need to raise awareness about the work of Alzheimer Scotland, to ensure that carers and people with dementia know that they are not alone as they cope with the illness; in particular, the support available through the freephone 24hr Dementia Helpline, specialist local services, carer support and education, the information service and website and the organisation’s campaigning and fundraising work
• the need for collaborative efforts to improve the dissemination of public information about the illness and help available, particularly amongst older people
• the need for sufficient high quality services to be available for people with dementia and their carers throughout Scotland. The survey results indicate that the public recognise dementia as a major health care issue, but many lack confidence in service provision. This concern is not unfounded. Whilst some progress has been achieved in the last decade, provision continues to vary widely across the country. The critical questions for the Scottish Executive are whether their recent recommendations to health boards to assess population needs for dementia and other mental health problems and plan appropriate capacity at all levels, will be enough to promote the necessary and urgent action needed.
• People with dementia also require community based services and should benefit from plans by local authorities to improve these services through the development of home support services and short breaks/respite care. However, recent studies of home care services suggest that staff lack specialist training in dementia care and that care at home for people with dementia is less likely to be encouraged by professionals.

Alzheimer Scotland has recommended to the Scottish Executive, health and local authorities that the following core services should be available to all who need them:

• Early intervention - diagnostic and assessment services; drug treatments and rehabilitation; information, emotional support and counselling, carer education, advocacy;
• Community care - home support, day services and short breaks; extra-care housing;
• Long-term care - specialist provision in care homes; NHS in-patient facilities;
• Palliative care.

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