This report is the outcome of a study investigating the views and experiences of people with dementia, carers and social work care managers across Scotland. It reveals a picture of dementia services under pressure, in which people with dementia cannot rely on their needs being met.

Whilst many people with dementia and carers receive good services and are successfully supported, there are serious deficiencies in the amount and quality of care services available. This report looks at the problems from the perspective of the professional whose role it is to arrange services and the services users and carers who depend on them.

Executive Summary

Introduction

  • Community care services are an essential support for people with dementia and carers alike. This study examined three of the most important services: day care, home care and overnight respite.
  • The views and experiences of people with dementia, informal carers and professionals combine to reveal a picture of community care services under considerable pressure.
  • Effective community support services are fundamental to the successful delivery of current health and social care policy, but previous studies have shown that the necessary support for carers and people with dementia to cope with the illness is not always available.
  • Dementia is a key health issue facing the nation. There will be a 75% increase in the number of people with dementia in Scotland by 2031.
  • The Scottish Government has identified dementia as a national priority.

About the study

  • Interviews were carried out with social work care managers in 17 Scottish councils to obtain their views and experiences of the level and quality of community care services for people with dementia relative to the demand they encounter.
  • A population needs assessment was carried out. The proportion of people with dementia who should be receiving community care services in each council area was compared with the number recorded as receiving services.
  • A freedom of information questionnaire was sent to all 32 Scottish councils asking about the provision of day care, home care and overnight respite services for people with dementia. Councils were also asked for a copy of their current operational eligibility criteria.
  • Approximately 160 carers and 70 people with dementia provided their experiences and views on community care services.
  • The study was designed to give a general picture of community care services for people with dementia across Scotland; it is not a comparison between councils.

Who needs a community care service?

  • Health Department Letter (2004) 44, estimates that 28% of people with dementia should be receiving community care services, but does not provide a specific target for day care, home care and overnight respite.
  • National statistics show considerable unmet need and wide variation between councils in the proportion of people with dementia receiving day care and home care services. However, deficiencies with these statistics mean we cannot be certain how many people with dementia are receiving these services. In addition there are no dementia-specific national statistics on the number of people receiving overnight respite.

Study findings

  • Many community care services provide appropriate support to people with dementia and their carers but both those arranging services and recipients reported difficulties with availability and quality.
  • Most councils had a waiting list for day care. Some councils also had a delay for home care services.
  • Specialist dementia day care was valued by people with dementia, carers and social work care managers alike. However, there is a shortfall in day care provision appropriate to the needs of people with dementia in the majority of councils.
  • There is a lack of alternatives to day care for people with dementia and an over-reliance on traditional models of day care.
  • The majority of home care services are task orientated; people with dementia are not being assisted to carry out tasks in order to maintain skills and a level of independence.
  • There is a shortfall in the level of home care provision in many councils. The amount of time care workers are allocated for each person means they are often under pressure to carry out tasks quickly and move onto the next person.
  • The vast majority of overnight respite for people with dementia is provided in care homes, with a lack of alternatives to meet the varying needs of people throughout the different stages of the illness.
  • Some care managers reported a lack of understanding of dementia amongst home care workers and a fear within mainstream day care of working with people with dementia.
  • Councils eligibility criteria for community care services differ, with a tightening of eligibility thresholds in many councils.

Conclusion

  • This study has demonstrated serious deficiencies in the provision of core community care services for people with dementia. It is essential that steps are taken now to relieve the pressure on services and plan for the future increase in the numbers of people with dementia.

Recommendations for the Scottish Government and councils:

  • Increased provision of specialist dementia day care and development of the level and quality of day opportunities available for people with dementia.
  • More time allocated to home care workers to enable a support-orientated service to be provided where appropriate, provide high quality personalised care and acknowledge that more time may be required to provide services for people with dementia than other care groups.
  • Greater variety and choice in respite options that recognise different needs and the availability of overnight respite within the home as part of a package of care where appropriate.
  • Improved training in dementia care for staff delivering community care services to people with dementia.
  • Clear consistent council eligibility criteria for community care services that provide understanding of how decisions are reached and ensure people with dementia receive the same level of service, in accordance with their assessed needs, wherever they live in Scotland.
  • A consistent standard of dementia-specific data should be collected at council level in a uniform format that enables accurate national statistics to be produced. This is essential for achieving effective strategic planning by providing an accurate picture of provision in each area and enabling analysis of the level of unmet need.
  • Increased funding is required now for community care services to meet the current needs of people with dementia and future funding must be increased in line with demographic changes and the increase in the number of people with dementia.

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