References

Albertini M, Tur-Sinai A, Lewin-Epstein N, Silverstein M. The older sandwich generation across European welfare regimes: demographic and social considerations. Eur J Popul. 2022; 38:(2)273-300 https://doi.org/10.1007/s10680-022-09606-7

Aldridge Z, Harrison Dening K. Family and other unpaid carers supporting people with dementia. J Comm Nurs. 2022; 36:(1)47-51

Aldridge Z. Chapter 16: Supporting families and carers of people with dementia. In: Harrison Dening K. London: Jessica Kingsley; 2019

Alzheimer's Research UK. How we calculated our ‘one in two’ dementia statistic—and what we will do about it. 2023. https://www.alzheimersresearchuk.org/blog/how-we-calculated-our-one-in-two-dementia-statistic-and-what-well-do-about-it/ (accessed 29 August 2023)

Alzheimer's Research UK. Impact on carers. 2011. https://dementiastatistics.org/statistics/impact-on-carers (accessed 29 August 2023)

Bressan V, Visintini C, Palese A. What do family caregivers of people with dementia need? A mixed-method systematic review. Health Soc Care Community. 2020; 28:(6)1942-1960 https://doi.org/10.1111/hsc.13048

Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009; 11:(2)217-228 https://doi.org/10.31887/dcns.2009.11.2/hbrodaty

Carers Trust. About caring. 2021. https://carers.org/about-caring/about-caring (accessed 29 August 2023)

Carers UK. Having a carers assessment. 2023. https://www.carersuk.org/help-and-advice/practical-support/carers-assessment/ (accessed 29 August 2023)

Carter J. Prevalence of all cause young onset dementia and time lived with dementia: analysis of primary care health records. J Dementia Care. 2022; 30:(3)1-5

Colombo F Help wanted?: Providing and paying for long-term care. OECD Health Policy Studies.Paris: OECD Publishing; 2011

Cooper C, Tandy AR, Balamurali TB, Livingston G. A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. Am J Geriatr Psychiatry. 2010; 18:(3)193-203 https://doi.org/10.1097/jgp.0b013e3181bf9caf

Czapka EA, Sagbakken M. Challenges related to providing care for parents with dementia across borders: A qualitative study on transnational carers in Oslo. J Aging Studies. 2020; 55 https://doi.org/10.1016/j.jaging.2020.100893

Dementia Action Alliance. The carers call to action. 2014. https://www.dementiaaction.org.uk/assets/0000/8675/DAA_The_Carers__Call_to_Action_Feb_2014.pdf (accessed 29 August 2023)

Glendinning C. Peer review on improving reconciliation of work and long-term care.Germany: European Commission; 2018

Harrison Dening K. Dementia: recognition and cognitive testing in community and primary care settings. Br J Community Nurs. 2023; 28:(7)332-336 https://doi.org/10.12968/bjcn.2023.28.7.332

Hazan J, Liu KY, Isaacs JD, Burns A, Howard R. Has COVID-19 affected dementia diagnosis rates in England?. Int J Geriatr Psychiatry. 2023; 38:(7) https://doi.org/10.1002/gps.5976

Herat-Gunaratne R, Cooper C, Mukadam N “In the Bengali Vocabulary, there is no such word as care home”: caring experiences of UK Bangladeshi and indian family carers of people living with dementia at home. Gerontologist. 2020; 60:(2)331-339 https://doi.org/10.1093/geront/gnz120

Kuruppu DK, Matthews BR. Young-onset dementia. Semin Neurol. 2013; 33:(4)365-385 https://doi.org/10.1055/s-0033-1359320

Leszko M, Allen DJ. Caring from a distance: Experiences of Polish immigrants in the United States providing care to parents with dementia overseas. J Gerontol B Psychol Sci Soc Sci. 2023; https://doi.org/10.1093/geronb/gbad086

The trajectory of dementia in the UK-Making a difference. 2014. https://www.alzheimersresearchuk.org/wp-content/uploads/2015/01/OHE-report-Full.pdf (accessed 29 August 2023)

Lindeza P, Rodrigues M, Costa J, Guerreiro M, Rosa MM. Impact of dementia on informal care: a systematic review of family caregivers' perceptions. BMJ Support Palliat Care. 2020; https://doi.org/10.1136/bmjspcare-2020-002242

Liu C, Badana ANS, Burgdorf J, Fabius CD, Roth DL, Haley WE. Systematic review and meta-analysis of racial and ethnic differences in dementia caregivers' well-being. Gerontologist. 2021; 61:(5)e228-e243 https://doi.org/10.1093/geront/gnaa028

Livingston G, Huntley J, Sommerlad A Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. Lancet. 2020; 396:(10248)413-446 https://doi.org/10.1016/s0140-6736(20)30367-6

Lund L, Ross L, Petersen MA Process, content, and experiences of delivering the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the Danish specialised palliative care setting. Support Care Cancer. 2022; 30:(1)377-387 https://doi.org/10.1007/s00520-021-06432-1

Martin A, O'Connor S, Jackson C. A scoping review of gaps and priorities in dementia care in Europe. Dementia (London). 2020; 19:(7)2135-2151 https://doi.org/10.1177/1471301218816250

Muir-Hunter SW, Graham L, Montero Odasso M. Reliability of the berg balance scale as a clinical measure of balance in community-dwelling older adults with mild to moderate Alzheimer disease: a pilot study. Physiother Can. 2015; 67:(3)255-262 https://doi.org/10.3138/ptc.2014-32

A road less rocky – supporting carers of people with dementia. 2013. https://carers.org/resources/all-resources/84-a-road-less-rocky-a-supporting-carers-of-people-with-dementia (accessed 29 August 2023)

Addressing Dementia: The OECD Response, OECD Health Policy Studies.Paris: OECD Publishing; 2015

Organization for Economic Cooperation and Development. Health at a glance: Europe 2016: state of health in the EU cycle. 2016. https://www.oecd-ilibrary.org/social-issues-migration-health/health-at-a-glance-europe-2016_9789264265592-en (accessed 29 August 2023)

Dementia and minority ethnic carers. Better Health Briefing 46. 2018. https://raceequalityfoundation.org.uk/wp-content/uploads/2022/10/REF-Better-Health-463.pdf (accessed 29 August 2023)

Parveen S, Peltier C, Oyebode JR. Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise. Health Soc Care Community. 2017; 25:(2)734-742 https://doi.org/10.1111/hsc.12363

Pleschberger S, Reitinger E, Trukeschitz B, Wosko P. Older people living alone (OPLA)—non-kin-carers' support towards the end of life: qualitative longitudinal study protocol. BMC Geriatr. 2019; 19:(1) https://doi.org/10.1186/s12877-019-1243-7

Rand S, Malley J, Forder J. Are reasons for care-giving related to carers' care-related quality of life and strain? Evidence from a survey of carers in England. Health Soc Care Community. 2019; 27:(1)151-160 https://doi.org/10.1111%2Fhsc.12634

Teahan Á, Lafferty A, Cullinan J, Fealy G, O'Shea E. An analysis of carer burden among family carers of people with and without dementia in Ireland. Int Psychogeriatr. 2021; 33:(4)347-358 https://doi.org/10.1017/s1041610220000769

The Carer Support Needs Assessment Tool Intervention (CSNAT-I) Home. 2022. https://csnat.org/ (accessed 4 September 2023)

UK Legislation. Care Act 2014. 2014. https://www.legislation.gov.uk/ukpga/2014/23/contents/enacted (accessed 29 August 2023)

Waligora KJ, Bahouth MN, Han HR. The self-care needs and behaviors of dementia informal caregivers: a systematic review. Gerontologist. 2019; 59:(5)e565-e583 https://doi.org/10.1093/geront/gny076

Projections of older people living with dementia and costs of dementia care in the United Kingdom, 2019–2040 CPEC Working paper 5. 2019. http://www.lse.ac.uk/cpec/assets/documents/Working-paper-5-Wittenberg-et-al-dementia.pdf (accessed 29 August 2023)

Caring for a person living with dementia: identifying and assessing a carer's needs

02 October 2023
Volume 28 · Issue 10

Abstract

As the population ages and so do the numbers of people with dementia, there will also be an increase in the number of unpaid family carers. Estimates suggest that one in three of us will become a carer for someone with dementia during our lifetime, some caring for more than one person diagnosed with dementia in their family. There are currently over 700 000 people in the UK acting as primary unpaid carers for people with dementia, all of whom make a substantial contribution, both financially and physically, to their care and support. Carers of people with dementia can experience high levels of carer burden and distress as well poor health and wellbeing due to their caring roles. However, they can sometimes be less than visible to health and social care services as they may not identify themselves as carers or their needs may not be easily recognised which leaves them at risk. Identifying people in caring roles and assessing their needs are the first two steps in supporting them. Community nurses are well placed to do this within their roles.

There are estimated to be 944 000 people living with dementia in the UK and it is estimated this will increase to 1 million people by 2025 (Wittenberg et al, 2019). Whilst increasing age is considered the most significant risk factor to developing dementia in later life (Livingston et al, 2020), a person can develop dementia at any age, especially where the onset is in a person under the age of 65 years (Kuruppu and Matthews, 2013). Of the total number of people living with dementia in the UK, an estimated 70 800 will have young onset dementia, where the onset of their symptoms will occur under the age of 65 years (Carter et al, 2022).

The cost of dementia care is expected to almost triple, increasing from £15.7 billion in 2019 to over £45 billion by 2040 (Wittenberg et al, 2019). Wittenberg and colleagues (2019) attributed 14% of the total cost to healthcare, 45% as social care costs, 1% as other costs. However, a staggering 40% was attributed to unpaid care—provided by families, friends and supporters of a person living with dementia.

Register now to continue reading

Thank you for visiting Community Nursing and reading some of our peer-reviewed resources for district and community nurses. To read more, please register today. You’ll enjoy the following great benefits:

What's included

  • Limited access to clinical or professional articles

  • New content and clinical newsletter updates each month