Support for carers of people with dementia

It is estimated that there are 700,000 cases of dementia in the UK and around one million people caring for them. Dementia is a progressive and largely irreversible clinical syndrome that is characterised by a widespread impairment of mental function. Although many people with dementia retain positive personality traits and personal attributes, as their condition progresses they can experience complex problems including aggressive behaviour, restlessness, wandering, eating problems, incontinence, delusions, hallucinations and mobility difficulties.

As the population of older people in the UK grows, so does the number of people with dementia. The Eurodem Consortium found that 1% of 60- to 65-year-olds, 13% of 80- to 85-year olds and 32% of 90- to 95-year-olds are affected by dementia (Hofman et al, 1997). Dementia therefore affects around 5% of the over-65s, rising to 20% of the over-80s.

People with dementia usually become reliant on family, friends, neighbours and health and social care services. The majority of the one million carers for people with dementia are family members, who often care for their relative on a full-time basis.

Those providing care for people with dementia are one of the most vulnerable groups of carers, and often have high levels of stress, feelings of guilt, depression and other psychological problems. They frequently ignore their own health needs in favour of those of the person for whom they care. They may become exhausted, have poor physical health and feel isolated. Recent studies have shown that around 30% of this group suffer from significant psychiatric problems.

Health and social care managers should also ensure that carers of people with dementia have access to a comprehensive range of respite/short-break services. These should meet the needs of both the carer – in terms of location, flexibility and timeliness – and the person with dementia. The respite options offered to carers should include as much variety as possible, such as day care, day- and night-sitting, adult placement, short-term and overnight residential care. If these services are not provided in the person’s own home, transport should be offered to enable access to them.

Respite or short-break care of any sort should be characterised by meaningful and therapeutic activity tailored to the person with dementia and provided in an environment that meets their needs.

Providing this in the person’s own home should be considered whenever possible. This level of service provision will make both the person with dementia and their carer more comfortable – leading to the best possible outcomes for all.

Current research and evidence suggests that carers of people with dementia who experience psychological distress and negative psychological impact should be offered psychological therapy, including cognitive behavioural therapy, conducted by a specialist practitioner. However, there has also been a call for further research into this area to generate a better evidence base around the cost effectiveness of this for local health and social care services.

Practitioners’ messages

Support for carers in general has been given priority in England and Wales through Carers’ Strategy documents. Research into good practice around supporting carers of people with dementia has stressed that those carrying out carers’ assessment should seek to identify any psychological distress or psychosocial impact on the carer as soon as possible. This should be an ongoing process and should include any period after the person with dementia has entered residential care.

● Peer-support groups with other carers, tailored to the needs of individuals depending on the stage of dementia of the person being cared for and other characteristics.
● Support and information by telephone and through the internet.
● Training courses about dementia, services and benefits, and communication and problem-solving in the care of people with dementia.
● Involvement of other family members as well as the primary carer in family meetings.

Further information
● NICE/SCIE guideline: Dementia: Supporting People with Dementia and their Carers in Health and Social Care
● Practice guide 05: Implementing the Carers (Equal Opportunities) Act 2004
● Practice guide 02: Assessing the Mental Health Needs of Older People
● Hofman, A., Ott, A., Breteler, M. M. B., et al. (1997) “Atherosclerosis, apolipoprotein E and prevalence of dementia and Alzheimer’s disease in the Rotterdam Study”, Lancet, 349, pp. 151-154.

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Stephen Burke’s blog (Stephen is Chief Executive of older people’s charity Counsel and Care)