The Care Path - Carers

It has been estimated that three quarters of people with moderate or severe dementia who live in the community are supported by unpaid carers. The most important ‘provider sector’ is the informal one – family members and friends – and the availability of informal support significantly influences the level and type of need for formal care (Alzheimer's Society, 2007).

Carers who provide ‘intensive and substantial’ levels of care are eligible for an ‘assessment of need’ from their local Social Services Department (Department of Health, 2001, 2005). As noted earlier carers of people with dementia seem to have particularly high levels of stress. Consequently, assessments of users with dementia should also routinely include assessment of carers’.

Care plans for carers may include interventions such as:

  • individual or group skills training or psycho-education (advice and guidance on how to support a relative with a mental health problem)
  • information and advice
  • support groups
  • access to respite care (short breaks for the user in a care home, sitting services or day care)
  • therapy for those carers who experience psychological distress

Dementia carers gain much from support from services particularly respite care, the Admiral Nursing Services and carers support groups.

Support groups, which are usually organised by voluntary agencies such as the Alzheimer’s Society, are highly valued. Carers can provide mutual support by sharing experiences, pass on skills and tips, get advice about welfare benefits, and enjoy social time with a peer group.

In terms of more targeted individual interventions, there is some evidence that ‘skills training’ to help carers cope with challenging behaviour, supporting the development of ‘coping strategies’ and focused programmes of counselling, reduce depressive symptoms and the risk of care home admission for the user.

A number of services provided for service users, such as home care, also benefit carers. Despite their level of need, there is evidence that those dementia carers who do the most intensive care, receive limited support from services.

Carers are often the most passionate and effective advocates on behalf of their cared for relatives, especially for people with dementia.

Service example:

London Borough of Redbridge (Dementia Resources Centre), Age Concern and Redbridge Carers Support Service developed an innovative approach to meeting the needs of older people from ethnic minority groups locally. The programme initially aimed to target isolated and vulnerable older people with dementia and their carers from local black and minority ethnic groups to assess need and to provide information, support and services. The results of the survey were fed in to mainstream commissioning to ensure needs were met and an information, training and support group was established meeting weekly. The groups support individuals and their carers, assessing appropriate needs and facilitating and providing information. Feedback from the groups is very positive and encouraging in relation to supporting carers, providing information, being a valued service, linking with other agencies such as primary care, increasing awareness and providing valued information and support impacting on the well being of those who attend.