Alzheimer's Society's view on carer support

Read our position statement on carer support and the needs of people affected by dementia. 

There are estimated to be over 670,000 people in the UK acting as primary, unpaid carers for people with dementia. This saves an estimated £11 billion each year (Alzheimer's Society, 2014).

Caring can be an overwhelming experience, bringing irreversible changes to lives and relationships. Carers must be provided with comprehensive support, including assistance with day-to-day caring, emotional support and regular, planned access to respite.

What Alzheimer's Society calls for:

  • Identify and support carers. In 2013, the Carers Trust found that only half of carers were given an assessment of their support needs (Carers' Trust 2013). Assessments are vital to ensuring that appropriate support is put in place. In England, the Care Act now requires local authorities to assess carers' support needs and, if they are eligible, provide support. In addition, the Quality Outcomes Framework in England created new incentives for GPs to identify carers and ensure that they have an assessment. Alzheimer's Society will work to ensure that local authorities and GPs improve their practice in this area. 
  • Improve financial support for carers. Many carers of people with dementia are worse off as a result of reduced income from work and higher costs (CEBR 2014). This is despite the fact that carers of people with dementia save an estimated £11 billion every year (Alzheimer's Society, 2014). Carers' allowance should be increased and the unfair cap on carers' earnings of £102 per week ended so that more people are able to afford to care.
  • Proactively provide carers with better information, advice and guidance. Research evidence shows that there is a lack of information at all stages of the caring journey (Carers' Trust 2013). Carers must be provided with timely information, advice and guidance to help them make effective decisions about care and support and develop effective caring strategies. This should include access to training programmes, such as the Society's Carer Information and Support Programme, to allow carers provide more effective care as dementia progresses. The Care Act now requires local authorities to provide information, advice and guidance to carers. Alzheimer's Society will work to ensure that local authorities improve their practice in this area.
  • Increase requirements for employers to allow caring leave and incentives for employers to develop carer support schemes. 21 per cent of carers give up work or reduce hours at a cost to businesses in England of £1.6 billion (CEBR 2014). Support services can help carers to continue to work. However, under half of carers of people with dementia have been offered support at work (Employers for Carers 2014). 
  • Emotional support. Carers of people with dementia experience greater strain and distress than carers of other older people (Moise 2004). Carers should be provided with access to a range of psychological therapies in line with NICE and SCIE guidance 
  • Comprehensive home support services. Carers should be provided with high-quality assistance with day-to-day caring and other tasks that fall outside the traditional definition of care, but from which carers report real benefit, such as gardening, shopping and housework. 
  • Regular respite. Many carers would be unable to continue caring without respite care. However, one-third of carers of people with dementia had no access to respite and one-fifth found that respite was not dementia friendly (Carers' Trust, 2013). Short, regular, planned respite care provided in a person with dementia's own home is low cost and avoids undue stress (Alzheimer's Society, TBC). Carers should also be offered respite in an alternative location depending on preference.
  • Peer support. Research evidence shows that peer support groups for carers of people with dementia improve mental wellbeing (Thompson 2007) and on-line forums, such as Alzheimer's Society's Talking Point, are valued sources of support (Carers' Trust 2013). Peer support networks should be accessible to all carers of people with dementia.
  • Involve carers in decisions about care and support. Carers offer a valuable insight into what the person with dementia may be experiencing or communicating (Chung 2008). Despite this, many carers report that this expertise is ignored by local authority care needs assessments and NHS Continuing Healthcare eligibility assessments. The Care Act now requires local authorities to involve carers in care needs assessments and care planning. Alzheimer's Society will work to ensure that local authorities and the NHS improve their practice in this area. 

References and further information

  • Carers' Trust (2013), A road less rocky: supporting carers of people with dementia
  • Centre for Economics and Business Research (2014), Cost of dementia to English businesses: A study into the costs to business from time taken to care,workforce skills and knowledge lost and consumer spending at risk through a lack of understanding of dementia
  • Employers for Carers (2014), Supporting carers who are caring for someone with dementia
    Alzheimer's Society (2014), Dementia UK: 2014 editionAlzheimer's Society, Carer Information and Support Programme
  • Alzheimer's Society (2011) Support. Stay. Save. Care and support of people with dementia in their own homes
  • Audit Commission (2000) Forget me not: Mental Health Services for Older People
  • Carers UK and University of Leeds (2011) Valuing carers
  • Carers UK (2012) Future Care: Growing the Care Market
  • Carers UK (2010) Tipping Point for Care: Time for a new social contract
  • Carers UK (2008) Carers in Crisis
  • Carers UK (2007) Real change not short change
  • Carers Week (2013), Prepared to care?
  • Commission on Funding of Care and Support (2011) Fairer Care Funding: The report of the Commission on Funding of Care and Support, chaired by Andrew Dilnot
  • Department of Health (2011). Carers strategy
  • Glasby, J., Ham, C., Littlechild, R., and McKay, S. (2010) The case for social care reform - the wider economic and social benefits, HCMS and IASS, University of Birmingham
  • Moise, Schwarzinger and Um (2004) Dementia care in 9 OECD countries: a comparative analysis OECD Health Working Paper no. 13, OECD: Paris
  • Murray et al (1999) EUROCARE: A cross-national study of co-resident spouse carers for people with Alzheimer's Disease: I factors Associated with carer burden, International Journal of Geriatric Psychiatry, 14, 651-661
  • NHS Information Centre (2010) Survey of Carers in Households 2009-10
  • Office of National Statistics, 2011 Census - unpaid care snapshot
  • The Princess Royal Trust for Carers (2011) Always on call, always concerned. A survey of the experiences of older carers
  • Yeandle, S., Bennett, C., Buckner, L., Fry, G., and Price, C., (2007) Managing Caring and Employment, CES Report

Last updated June 2014 by Laurence Thraves