Skip to main content Accessibility help

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
×
Home
  • Home
EnglishFrançais
Ageing & Society Ageing & Society

Article contents

The assessment experience of spousal dementia care-givers: ‘It's made me realise that I am a person also’

Published online by Cambridge University Press:  05 July 2018

Nancy Guberman ,
Janice Keefe  and
Pamela Fancey
Nancy Guberman
Affiliation:
School of Social Work, University of Quebec in Montreal, Canada
Janice Keefe
Affiliation:
Nova Scotia Centre on Aging, Mount Saint Vincent University, Halifax, Nova Scotia, Canada
Pamela Fancey
Affiliation:
Nova Scotia Centre on Aging, Mount Saint Vincent University, Halifax, Nova Scotia, Canada
Corresponding
E-mail address:
guberman.nancy@uqam.ca
Get access
Rights & Permissions[Opens in a new window]

Abstract

This article is based on a study that used a validated care-giver assessment instrument known as ‘The C.A.R.E. (Caregivers’ Aspirations, Realities, and Expectations) Tool’ to understand its usefulness in working with older adults caring for a spouse with cognitive impairment. It draws on data collected as part of a larger, quasi-experimental pre- and post-test study examining the impact of a care-giver assessment on older spousal care-givers of a partner with cognitive impairment. One hundred community-living individuals (average age of 74) participated in the study. Participants met with a third-year nursing student who administered The C.A.R.E. Tool. Within three to seven days following this, a research team member conducted a semi-structured interview by telephone. This interview provided participants with the opportunity to comment on their experience and the usefulness of The C.A.R.E. Tool. Transcriptions of the interviews were analysed using a thematic analysis. Results indicate that the assessment experience was evaluated positively by most participants. Two broad themes emerged: assessment encourages care-givers to take stock of their situation, and it provides a relationship with a caring professional. In particular, the assessment experience gave these care-givers to have the opportunity to reflect, while expressing emotions and developing awareness, and provided them with an appreciated relationship with a caring professional who helped to validate and normalise their situation. For care-givers, the results suggest that assessment may serve as a catalyst for taking action in their care-giving situation or turning to services for help. For practitioners, assessment may increase awareness of the experience of spousal care-givers, potentially leading to interventions to support them. This study found that the attitudes and knowledge of practitioners play a role in care-givers’ experience of the assessment as positive. However, the goal of assessment must be clarified, as outcomes of other tools will differ depending on the aims.

Keywords

carer care-giver spouse assessment benefits cognitive impairment practice
Type
Article
Information
Ageing & Society , Volume 39 , Issue 11 , November 2019 , pp. 2443 - 2464
Copyright
Copyright © Cambridge University Press 2018 

Access options

Get access to the full version of this content by using one of the access options below.
If you should have access and can't see this content please contact technical support.

References

AARP (2015) Caring in the U.S. Available online at https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf (Accessed 12 January 2018).Google Scholar
Adams, KB (2008) Specific effects of caring for a spouse with dementia: differences in depressive symptoms between caregiver and non-caregiver spouses. Psychogeriatrics 20, 508–520.Google ScholarPubMed
Barylakr, L, Guberman, N, Fancey, P and Keefe, J (2006) Examining the use of a caregiver assessment tool – barriers, outcomes and policy implications. Ottawa: Final Report to Health Canada.Google Scholar
Beeson, R (2003) Loneliness and depression in spousal caregivers of those with Alzheimer's disease versus non-caregiving spouses. Archives of Psychiatric Nursing 17, 135–143.CrossRefGoogle ScholarPubMed
Bottiggi Dassel, K, Carr, D and Vitaliano, P (2017) Does caring for a spouse with dementia accelerate cognitive decline? Findings from the Health and Retirement Study. The Gerontologist 57, 319–328.CrossRefGoogle Scholar
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, pp. 77–101.CrossRefGoogle Scholar
Byrne, K (2016) Family Caregiver Assessment in Health Care Settings. Literature Review and Environmental Scan Project. A Report to the Change Foundation. Toronto: CareSwell Consulting. Available online at file:///C:/Users/lknight/Downloads/Caregiver-Assessment-Report-FINAL.pdf (Accessed 28 April 2017).Google Scholar
Campbell-Sills, L, Barlow, DH, Brown, TA and Hofmann, SG (2006) Acceptability and suppression of negative emotion in anxiety and mood disorders. Emotion 6, 587–595.CrossRefGoogle ScholarPubMed
Canadian Caregiver Coaltion (2015) Beyond Recognition – Caregiving & Human Rights in Canada: A Policy Brief. Available online at http://www.carerscanada.ca/wp-content/uploads/2016/02/CCC_Policy_brief_Human_rights_EN.pdf (Accessed 22 January 2018).Google Scholar
Carers, UK (2002) Carers Assessments: Good Practice. London: Carers UK.Google Scholar
Carers UK (2014 a) Carers Assessment. Available online at https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment (Accessed 12 January 2018).Google Scholar
Carers UK (2014 b) Why We're Here. Available online at http://www.carersuk.org/about-us/why-we-re-here (Accessed 12 January 2018).Google Scholar
Carradice, A, Shankland, MC and Beail, N (2002) A qualitative study of the theoretical models used by UK mental health nurses to guide their assessments with family caregivers of people with dementia. International Journal of Nursing Studies 39, 17–26.CrossRefGoogle ScholarPubMed
Chappell, N and Funk, L (2011) Social support, caregiving and aging. Canadian Journal on Aging 30, 3, 355–730.CrossRefGoogle ScholarPubMed
Coleman, EA and Roman, SP (2015) Family caregivers’ experiences during transitions out of hospitals. Journal for Healthcare Quality 37, 12–21.CrossRefGoogle Scholar
Colombo, F, Llena-Nozal, A, Mercier, J and Tjadens, F (2011) Help Wanted? Providing and Paying for Long-term Care. OECD Health Policy Studies, OECD Publishing. Available online at http://www.keepeek.com/Digital-Asset-Management/oecd/social-issues-migration-health/help-wanted_9789264097759-en#.WmY3nKinGUl#page2 (Accessed 22 January 2018).CrossRefGoogle Scholar
Dill, A (1993) Defining needs, defining systems: a critical analysis. The Gerontologist 33, 453–460.CrossRefGoogle ScholarPubMed
Ducharme, F, Levesque, L, Lachance, L, Kergoat, MJ and Coulombe, R (2011) Challenges associated with transition to caregiver role following diagnostic disclosure of Alzheimer's disease: a descriptive study. International Journal of Nursing Studies 48, 1109–1119.CrossRefGoogle ScholarPubMed
Ewing, G and Grande, G (2013) Development of a Carers’ Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: a qualitative study. Palliative Medicine 27, 244–256.CrossRefGoogle ScholarPubMed
Family Caregiver Alliance (2006) Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a National Consensus Development Conference. Volume I, San Francisco: Family Caregiver Alliance.Google Scholar
Fast, J, Dosman, D, Lero, S and Lucas, S (2013) The Intersection of Caregiving and Employment Across the Life Course. Final Report. Edmonton: University of Alberta. Available online at http://rapp.ualberta.ca/Portals/116/Documents/Reports/IntersectionCaregivingAndEmployment2013Jan.pdf?ver=2016-06-15-144900-460 (Accessed 28 April 2017).Google Scholar
Feinberg, LF (2004) The state of the art of caregiver assessment. Generations 27, 24–32.Google Scholar
Feinberg, LF, Wolkwitz, K and Goldstein, C (2006) Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support. Washington DC: AARP Public Policy Institute.Google Scholar
Gaugler, JE, Kane, RA and Langlois, J (2000) Assessment of family caregivers of older adults. In RL, Kane and RA, Kane (eds), Assessing the Well-being of Older People: Measures, Meaning, and Practical Applications. New York: Oxford University Press, pp. 320–359.Google Scholar
Geron, SM (1997) Introduction. Taking the measure of assessment. Generations 21, 5–9.Google Scholar
Graham, SM, Huang, JY, Clark, MS and Helgeson, VS (2008) The positives of negative emotions: willingness to express negative emotions promotes relationships. Personality and Social Psychology Bulletin 34, 394–406.CrossRefGoogle ScholarPubMed
Grande, EG, Austin, L, Ewing, G, O'Leary, N and Roberts, E (2017) Assessing the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: a stepped wedge cluster trial. BML Support Palliative Care 7, 326–334.Google ScholarPubMed
Greene, A, Aranda, S, Tieman, JJ, Fazekas, B and Currow, DC (2011) Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study. Palliative Medicine 26, 917–923.CrossRefGoogle ScholarPubMed
Guberman, N (2006) A practice perspective. In Family Caregiver Alliance (ed.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference. Volume II, San Francisco: Family Caregiver Alliance, pp. 38–57.Google Scholar
Guberman, N, Keefe, J, Fancey, P and Barylak, L (2007) ‘Not another form!’: lessons for implementing caregiver assessment in health and social services agencies. Health and Social Care in the Community 15, 577–587.CrossRefGoogle Scholar
Guberman, N, Lavoie, J-P, Pepin, J, Lauzon, S and Montejo, M-E (2006) Formal service practitioners’ views of family caregivers’ responsibilities and difficulties. Canadian Journal on Aging 25, 43–53.CrossRefGoogle ScholarPubMed
Guberman, N and Maheu, P (2002) Conceptions of family caregivers: implications for professional practice. Canadian Journal on Aging 21, 25–35.CrossRefGoogle Scholar
Gwyther, LP, Ballard, EL and Hinman-Smith, EA (1990) Overcoming Barriers to Appropriate Service Use: Effective Individualized Strategies for Alzheimer's Care. Durham, North Carolina: Center for the Study of Aging and Human Development.Google Scholar
Hartke, RJ, King, RB, Heinemann, AW and Semik, E (2006) Accidents in older caregivers of persons surviving stroke and their relation to caregiver stress. Rehabilitation Psychology 51, 150–156.CrossRefGoogle Scholar
Hayes, J, Boylstein, C and Zimmerman, M (2009) Living and loving with dementia: negotiating spousal and caregiver identity through narrative. Journal of Aging Studies 23, 48–59.CrossRefGoogle Scholar
Keefe, J (2011) Supporting Caregivers and Caregiving in an Aging Canada. IRPP Study 23, Montreal: Institute for Research on Public Policy. Available online at http://irpp.org/wp-content/uploads/assets/research/faces-of-aging/supporting-caregivers-and-caregiving-in-an-aging-canada/IRPP-Study-no23.pdf (Accessed 28 April 2017).Google Scholar
Keefe, J, Guberman, N, Fancey, P, Barylak, L and Nahmiash, D (2008) Caregivers’ Aspirations, Realities, and Expectations: The CARE Tool. Journal of Applied Gerontology 27, 286–308.CrossRefGoogle Scholar
Kim, K, Zarit, SH, Femia, EE and Savla, J (2012) Kin relationship of caregivers and people with dementia: stress and response to intervention. International Journal of Geriatric Psychiatry 27, 59–66.CrossRefGoogle ScholarPubMed
Lavoie, J-P (2014) La responsabilité des soins aux aînés au Québec. IRPP Study 48, Institute for Research on Public Policy, Montreal. Available online at http://irpp.org/research-studies/study-no48/ (Accessed 5 May 2017).Google Scholar
Levine, C (2008) Nursing and social work leadership. American Journal of Nursing 108, 13–15.CrossRefGoogle ScholarPubMed
Levine, C (2016) Putting the spotlight on invisible family caregivers. Invited commentary. JAMA Internal Medicine 176, 380–381.CrossRefGoogle Scholar
Levine, C, Reinhard, S and Feinberg, L (2004) Family caregivers on the job: moving beyond ADLs and IADLs. Generations 27, 17–23.Google Scholar
Lundh, U and Nolan, M (2003) ‘I wasn't aware of that’: creating dialogue between family and professional careers. In Nolan, M, Lundh, U, Grant, G and Keady, J (eds), Partnerships in Family Care. Buckingham, UK: Open University Press, pp. 108–127.Google Scholar
Mayer, R, Oulette, F, Saint-Jacques, M-C and Turcotte, D (2000) Méthodes de recherché en intervention sociale. Boucherville, Canada: Gaëtan Morin.Google Scholar
Montgomery, R and Kwak, J (2008) TCARE: tailored caregiver assessment and referral. American Journal of Nursing 108, 54–57.CrossRefGoogle ScholarPubMed
Moore, CD (2008) Enhancing health care communication skills: preliminary evaluation of a curriculum for family caregivers. Home Health Care Services Quarterly 27, 21–35.CrossRefGoogle ScholarPubMed
Nankervis, J, Schofield, H, Herman, H and Bloch, S (1997) Home-based assessment for family carers: a preventative strategy to identify and meet service needs. International Journal of Geriatric Psychiatry 12, 103–201.3.0.CO;2-U>CrossRefGoogle ScholarPubMed
National Health Service (2014) Carers’ Rights and the Care Act. Available online at https://www.nhs.uk/conditions/social-care-and-support/carers-rights-care-act-2014/? (Accessed 26 January 2018)Google Scholar
Navaie-Waliser, M, Feldman, PH, Gould, DA, Levine, C, Kuerbis, AN and Donelan, K (2002) When the caregiver needs care: the plight of vulnerable caregivers. American Journal of Public Health 92, 409–413.CrossRefGoogle ScholarPubMed
Nolan, M, Bauer, M and Nay, R (2009) Supporting family carers: implementing a relational approach. In Nay, R and Garratt, S (eds), Nursing Older People: Issues and Innovations. Sydney: Elsevier, pp. 136–152.Google Scholar
Nolan, M and Philp, I (1999) COPE: towards a comprehensive assessment of caregiver need. British Journal of Nursing 8, 1364–1366, 1368–1369, 1372.CrossRefGoogle ScholarPubMed
Peacock, S, Forbes, D, Markle-Reid, M, Hawranik, P, Morgan, D, Jansen, L, Leipert, BD and Henderson, SR (2010) The positive aspects of the caregiving journey with dementia: using a strengths-based perspective to reveal opportunities. Journal of Applied Gerontology 29, 640–659.CrossRefGoogle Scholar
Pickard, L (2004) The Effectiveness and Cost-effectiveness of Support and Services to Informal Carers of Older People. Admiral Print Group, London: Audit Commission, Admiral Print Group, London. Available online at http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.259.8661&rep=rep1&type=pdf (Accessed 26 January 2018).Google Scholar
Pillemer, K, Suitor, J and Wethington, E (2003) Integrating theory, basic research, and intervention. Two case studies from caregiving research. The Gerontologist 43, 19–28.CrossRefGoogle ScholarPubMed
Pinquart, M and Sörenson, S (2011) Spouses, adult children, and children-in-law as caregivers of older adults: a meta-analytic comparison. Psychology and Aging 26, 1–14.CrossRefGoogle ScholarPubMed
Prorok, JC, Horgan, S and Seitz, DP (2013) Healthcare experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies. Canadian Medical Association Journal 185, E669–E680.CrossRefGoogle ScholarPubMed
Rascick, M and Ingersoll-Dayton, B (2004) The costs and rewards of caregiving among aging spouses and adult children. Family Relations 53, 317–325.CrossRefGoogle Scholar
Robinson, C and Williams, V (2002) Carers of people with learning disabilities and their experience of the 1995 Carers Act. British Journal of Social Work 32, 169–183.CrossRefGoogle Scholar
Rousseau, N, Lavoie, J-P, Guberman, N, Fournier, M, Béland, F and Grenier, L (2008) Les obligations de soutien aux personnes âgées: obligations normatives exprimées à l’égard des ex-conjoints et des beaux-enfants. Revue Canadienne du vieillissement 27, 371–384.CrossRefGoogle Scholar
Salmon, JR, Kwak, J, Acquaviva, KD, Egan, KA and Brandt, K (2005) Validation of the Caregiving at Life's End questionnaire. American Journal of Hospice and Palliative Medicine 22, 188–194.CrossRefGoogle ScholarPubMed
Savundranayagam, MY (2014) Receiving while giving: the differential roles of receiving help and satisfaction with help on caregiver rewards among spouses and adult-children. International Journal of Geriatric Psychiatry 29, 41–48.CrossRefGoogle ScholarPubMed
Schulz, R and Beach, SR (1999) Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA: The Journal of the American Medical Association 282, 2215–2219.CrossRefGoogle ScholarPubMed
Schulz, R, O'Brien, AT, Bookwala, J and Fleissner, K (1995) Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. The Gerontologist 35, 771–791.CrossRefGoogle ScholarPubMed
Silverman, M (2009) Counselling with Caregivers: A Guide for Professionals. Montreal.: Les éditions du remue-ménage, Montreal.Google Scholar
Sinha, M (2012) Spotlight on Canadians: Portrait of Caregivers, 2012. Analytical Paper, Statistics Canada, Ottawa. Available online at http://healthcareathome.ca/mh/en/Documents/Portrait%20of%20Caregivers%202012.pdf (Accessed 28 April 2017).Google Scholar
Snyder, CM, Fauth, E, Wanzek, J, Piercy, KW, Norton, MC, Corcoran, C, Rabins, PV, Lyketsos, CG and Tschanz, JT (2015) Dementia caregivers’ coping strategies and their relationship to health and well-being: the Cache County Study. Aging and Mental Health 19, 390–399.CrossRefGoogle ScholarPubMed
Solomon, D, Brown, AS, Brummel-Smith, K, Burgess, L, D'Agostino, RB, Goldschmidt, J W, Halter, JB, Hazzard, WR, Jahnigen, DW, Phelps, C, Raskind, M, Schrier, RW, Sox, HC, Williams, SV and Wykle, M (2011) National Institutes of Health Consensus Development Conference statement: geriatric assessment methods for clinical decision-making. Journal of the American Geriatrics Society 36, 342–347.Google Scholar
Stanton, AL and Low, CA (2012) Expressing emotions in stressful contexts: benefits, moderators, and mechanisms. Current Directions in Psychological Science 21, 124–128.CrossRefGoogle Scholar
Statistics Canada (2011) Visible Minority, Immigrant Status and Period of Immigration, Age Groups and Sex for the Population in Private Households in Canada, Provinces, Territories (2011 National Household Survey), Canada. Available online at http://www12.statcan.gc.ca/nhs-enm/2011/dp-pd/dt-td/Rp-eng.cfm?LANG=E&APATH=3&DETAIL=0&DIM=0&FL=A&FREE=0&GC=0&GID=1118296&GK=0&GRP=1&PID=105392&PRID=0&PTYPE=105277&S=0&SHOWALL=0&SUB=0&Temporal=2013&THEME=95&VID=0&VNAMEE=&VNAMEF= (Accessed 25 January 2018).Google Scholar
Torbay and South Devon NHS Foundation Trust (2017) Carers Assessment Evaluation Report. Available online at https://www.torbayandsouthdevon.nhs.uk/uploads/carers-assessment-evaluation-report-april-2017.pdf (Accessed 26 January 2018).Google Scholar
Twigg, J (1988) Models of carers: how do social care agencies conceptualise their relationship with informal carers. International Social Policy 18, 53–66.CrossRefGoogle Scholar
Vitaliano, PP, Murphy, M, Young, HM, Echeverria, D and Borson, S (2011) Does caring for a spouse with dementia promote cognitive decline? A hypothesis and proposed mechanisms. Journal of the American Geriatrics Society 59, 900–908.CrossRefGoogle ScholarPubMed
Vitaliano, PP, Zhang, J and Scanlan, JM (2003) Is caregiving hazardous to one's physical health? A meta-analysis. Psychological Bulletin 129, 946–972.CrossRefGoogle ScholarPubMed
Ward-Griffin, C and McKeever, P (2000) Relationships between nurses and family caregivers: partners in care? Advances in Nursing Science 22, 89–103.CrossRefGoogle ScholarPubMed
Yap, P, Luo, N, Ng, WY, Chionh, HL, Lim, J and Goh, J (2010) Gain in Alzheimer care instrument – a new scale to measure caregiving gains in dementia. American Journal of Geriatric Psychiatry 18, 68–76.CrossRefGoogle ScholarPubMed

Altmetric attention score

Full text views

Full text views reflects PDF downloads, PDFs sent to Google Drive, Dropbox and Kindle and HTML full text views.

Total number of HTML views: 38
Total number of PDF views: 228 *
View data table for this chart

* Views captured on Cambridge Core between 05th July 2018 - 19th January 2021. This data will be updated every 24 hours.

Hostname: page-component-77fc7d77f9-cctwg Total loading time: 0.293 Render date: 2021-01-19T00:11:32.247Z Query parameters: { "hasAccess": "0", "openAccess": "0", "isLogged": "0", "lang": "en" } Feature Flags last update: Mon Jan 18 2021 23:56:23 GMT+0000 (Coordinated Universal Time) Feature Flags: { "metrics": true, "metricsAbstractViews": false, "peerReview": true, "crossMark": true, "comments": true, "relatedCommentaries": true, "subject": true, "clr": true, "languageSwitch": true, "figures": false, "newCiteModal": false, "shouldUseShareProductTool": true, "shouldUseHypothesis": true, "isUnsiloEnabled": true }

Send article to Kindle

To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

The assessment experience of spousal dementia care-givers: ‘It's made me realise that I am a person also’
Available formats
×

Send article to Dropbox

To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

The assessment experience of spousal dementia care-givers: ‘It's made me realise that I am a person also’
Available formats
×

Send article to Google Drive

To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

The assessment experience of spousal dementia care-givers: ‘It's made me realise that I am a person also’
Available formats
×
×

Reply to: Submit a response

Your details

Conflicting interests

Do you have any conflicting interests? *