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People with dementia living alone

1. Summary

About one-third of all people with dementia in the UK live alone (Mirando-Costillo, 2010). With the right support, it is possible for people with dementia to live independently in their own homes, sometimes until the end of their lives.  Alzheimer’s Society believes that people with dementia who wish to remain in their own homes should be supported to do so for as long as possible.  Good quality care at home can reduce admissions to acute hospital care and early entry into care homes (Alzheimer’s Society, 2011).  However, the Society also recognises that it may not be possible for all people with dementia to live alone in their own home, and this is likely to become more difficult as the condition progresses.

People with dementia living alone are more likely to become socially isolated and unable to access key services (Alzheimer’s Society 2013).  They are also more likely to feel lonely.  Alzheimer’s Society believes that having opportunities to interact socially and take part in activities are important to maintaining a good quality of life.  Tackling loneliness among older people in general is now on the public policy agenda but Alzheimer’s Society believes that there is more work to be done to support people with dementia living alone.

2. Background

About one-third of all people with dementia live on their own (Mirando-Costillo, 2010). The Department for Communities and Local Government (2010) has predicted that between 2008 and 2033 there will be a 38 per cent increase in the numbers of people aged between 75 and 84 who live alone.  Given that dementia is more prevalent in older people (Alzheimer’s Society, 2012), there is a high probability the number of people with dementia living alone will increase in the future.

Current public policy aims to enable people to live independently in their own homes for as long as possible.  In England in 2012, the Government announced funding to create or adapt homes for independent living to allow people to live at home for longer.  The Department of Health, working with the Homes and Communities Agency and Greater London Authority has committed £300 million over five years to build partnerships with housing associations and private house-builders to develop innovative housing solutions for people living with long-term conditions, including dementia (Department of Health, 2012a).  Alzheimer’s Society believes that appropriate housing services and support are key to supporting people with dementia in the community.
However, being supported to remain independent in their own homes does not necessarily mean that people living alone will have a good quality of life.  Many people with dementia become socially isolated as their dementia means it is hard for them to maintain social contacts.  People living alone are also more likely to be socially isolated as they do not live with anybody to interact with.  Consequently, they are also more likely to be lonely.

There is research (Holt-Lunstad et al, 2010) which suggests that loneliness can lead to an early death.  Further health problems can add to the worries of a person with dementia, particularly if they live alone and are not able to share their concerns with another person they trust.  However, Alzheimer’s Society believes where there are appropriate services, people with dementia living alone can maintain social contacts and overcome loneliness.  All nations in the United Kingdom now have a dementia strategy, which aim to improve the quality of life of people with dementia, although progress still needs to be made in order to achieve the ambitions in the strategies.  There are also now policies in England, Wales and Northern Ireland to tackle social isolation.
In England, the Government has made it a priority to help older people overcome social isolation.  The Adult Social Care Outcomes Framework (ASCOF) for England for 2013/14 includes a measure of social isolation (Department of Health, 2012b).  The Care and Support White Paper states plans to encourage communities to reach out to those at risk of isolation (Department of Health, 2012c).  The Prime Minister’s challenge on dementia (Department of Health, 2012d) sets out ambitions to go further and faster to drive improvements in health and care for people with dementia, building on progress made through the National Dementia Strategy for England (Department of Health, 2009).

The Strategy for Older People in Wales (Welsh Assembly Government, 2003) focuses on improving social inclusion for people over the age of 50 and the Wales Together for Health Strategy (Welsh Government, 2012) includes a range of approaches to reduce the stigma around dementia.  In Northern Ireland, there are discussions about how to enable older people to remain independent in the community. 
Alzheimer’s Society believes that action now must be taken to ensure that the rhetoric behind the policies becomes reality and people with dementia living alone experience the benefits as soon as possible.

3. Loneliness among people with dementia living alone

Research shows that those who do live alone are more likely to be lonely (de Jong Gierveld et al, 2011).  Research for the Dementia 2013 report (Alzheimer’s Society, 2013) found that 62% of people with dementia living alone feel lonely.  This is compared to 38% of all people with dementia who responded to the survey.  People living alone have few social connections and the nature of dementia can make it hard for them to maintain social contacts.  Few people living alone with dementia have a large number of meaningful friendships outside of their own family which compounds feelings of loneliness.  

4. Services and support

The Society believes that people with dementia who want to remain in their own homes should be supported to do so for as long as possible.  Familiar surroundings can be reassuring.  In some cases, a person's dementia progresses quite quickly once the person moves, either to live with a family member or to enter a care home, especially if this is not well-planned. (Holder and Jolley, 2012).  However, people with dementia who live alone are reliant on support, whether this is from family and friends or formal carers.  Such support can ensure that a person with dementia living alone is able to wash and dress themselves, go to the shops, cook and eat dinner and take medication. 

People with dementia living alone find it harder to access information about services and obtain support.  They can lack guidance from another person to help them through the process of getting the appropriate services.

5. Lack of support

A lack of support from services can therefore have a more profound impact on people with dementia living alone as a result of their condition.  Research for Dementia 2013 found that over a third of people with dementia living alone had to stop doing things they enjoy as a result of a lack of services (Alzheimer’s Society, 2013).  Although Alzheimer’s Society recognises the importance of supporting people to carry out essential daily activities, the Society also believes that services should be available to ensure that people with dementia living alone can maintain a good quality of life.  Furthermore, Alzheimer’s Society believes that people with dementia must be supported to make decisions about their care.  Services providing information should also ensure that information is not just available digitally, but is accessible and useful to people with dementia.

6. Services and support to overcome loneliness

Alzheimer’s Society is urging everybody to work together to improve the quality of life for people with dementia and help them to overcome loneliness.

Alzheimer’s Society believes in building communities where everybody is able to contribute and people look out for each other.  The Society urges members of the public to become engaged in the dementia friends programme giving them the confidence to engage more fully with people they know with dementia and people they meet who they may suspect have cognitive difficulties.  Alzheimer’s Society is also encouraging businesses and organisations to commit to becoming dementia friendly.  This includes developing Dementia Friendly Communities in Northern Ireland and Dementia Supportive Communities in Wales.

Alzheimer’s Society also believes that local authorities must commission services which ensure not only that people with dementia living alone are not socially isolated or lonely, but also that they are able to remain independent in their own home for as long as possible. Home care services must be of high quality and ensure that people with dementia are treated with dignity and respect.  Evidence gathered for the All-Party Parliamentary Group on Dementia inquiry in 2011 (APPG on Dementia, 2011) found that high quality services ensure that people with dementia can remain living in their own home longer than those who have insufficient support.  Delaying individuals’ entry into a care home could save the NHS and local authorities around £72 million for each month of delay (APPG on Dementia, 2011) Alzheimer’s Society believes that commissioners must prioritise spending on community dementia services to reduce pressure on long-term care and acute services.

Alzheimer’s Society emphasises that not all people who are socially isolated are lonely.  There are people who enjoy being by themselves and do not seek the company of others.  Alzheimer’s Society believes that services for people with dementia must fit around individuals.  For example, younger people with dementia enjoy different activities and want to socialise with people of a similar age, rather than using services aimed at older people.  The Society believes that people with dementia must be fully involved in planning their care and services should be based around the person as an individual, making use of the personalisation agenda where appropriate.

7. The Society campaigns for

  • Adequate funding for the social care to address the underfunding of the system.
  • A fair system for charging for care which means that people with dementia do not face high care costs.
  • Community services, based around the needs of individuals, which ensure that a person with dementia living alone is not socially isolated or lonely.  Services should include social groups, befriending services and accessible transport.
  • Providers of care provide community services of high quality which ensure that people with dementia are treated with dignity and respect at all times.
  • Health care services which enable people with dementia to live an active and healthy lifestyle preventing them from developing other age-related health conditions.
  • Enabling people with dementia to have choice and control over their lives.
  • Raising awareness of dementia across society, enabling people to understand how to help people with dementia live well within their communities.

8. References and further information

All Party Parliamentary Group on Dementia (2011) The £20 billion question: An inquiry into improving lives through cost-effective dementia services, All Party Parliamentary Group on Dementia, London

Alzheimer’s Society (2011) Support. Stay. Save. Alzheimer’s Society, London

Alzheimer’s Society (2012) Dementia 2012: A national challenge. Alzheimer’s Society, London

Alzheimer’s Society (2013) Dementia 2013: The hidden voice of loneliness. Alzheimer’s Society, London

Department for Communities and Local Government (2010) Household Projections 2008 to 2033, England, Department for Communities and Local Government, London

Department of Health (2009) Living well with dementia: A national dementia strategy for England.  Department of Health.  London.

Department of Health (2012a) Prime Minister’s challenge on dementia: delivering major improvements in dementia care and research by 2015: A report on progress. Department of Health, London.

Department of Health (2012b) The Adult Social Care Outcomes Framework 2013/14. Department of Health, London

Department of Health (2012c) Care and Support White Paper. Department of Health.  London

Department of Health (2012d) Prime Minister’s challenge on dementia: delivering major improvements in dementia care and research by 2015. Department of Health, London.

Holder and Jolley (2012), Forced relocation between nursing homes: residents’ health outcomes and potential moderators. Reviews in Clinical Gerontology, 22(4) 301-319

Holt-Lunstad et al (2010), Social Relationships and Mortality Risk: A Meta-analytical review, Brigham Young University, Utah, USA

Mirando-Costillo et al (2010) People with dementia living alone: what are their needs and what kind of support are they receiving. International Psychogeriatics, 22(4) 607-617

Welsh Assembly Government (2003) The Strategy for Older People in Wales

Welsh Government (2012) Together for Health – Delivering End of Life Care
A Delivery Plan up to 2016 for NHS Wales.

Last updated: April 2013 by Laura Cook

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Alzheimer's Society factsheet about supporting people with dementia who live alone.

Out of Sight, Out of Mind

Age Concern's 2008 report on social exclusion and older people.

Contact the Alzheimer's Society policy team

Contact the Alzheimer's Society policy team

Email:
ppa@alzheimers.org.uk

       

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