Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-28T20:27:33.477Z Has data issue: false hasContentIssue false
  • English
  • Français

After the care journey: exploring the experiences of family carers of people living with dementia

Published online by Cambridge University Press:  03 June 2019

Sonja Jameson ,
Lynne Parkinson Open the ORCID record for Lynne Parkinson [Opens in a new window]  and
Annie Banbury
Sonja Jameson
Affiliation:
Centre for Regional Advancement of Learning, Equity, Access and Participation (LEAP), Central Queensland University, Rockhampton, Queensland, Australia
Lynne Parkinson*
Affiliation:
Centre for Regional Advancement of Learning, Equity, Access and Participation (LEAP), Central Queensland University, Rockhampton, Queensland, Australia
Annie Banbury
Affiliation:
Centre for Regional Advancement of Learning, Equity, Access and Participation (LEAP), Central Queensland University, Rockhampton, Queensland, Australia
*
*Corresponding author. Email: l.parkinson@cqu.edu.au
Get access Rights & Permissions [Opens in a new window]

Abstract

While the burden of caring for people living with dementia has been well documented, considerably less is known about how carers transition into post-care life. This study aimed to understand the experiences of primary family care-givers of people with dementia after the person with dementia has died. A specific focus of the research was understanding the barriers to transitioning into a positive post-care life, and facilitators that help sustain carers as they move forward after their care journey has ended. A qualitative exploratory, descriptive study was undertaken with nine primary carers for a family member who died with dementia (five spouses and four adult children). Semi-structured face-to-face or telephone interviews were conducted with carers between July and August 2016. Interview transcripts were analysed using a thematic approach. A number of factors that can act as barriers or facilitators to transition for carers were identified. Contextualising loss, restructuring identity, psychological health issues and the influence of social attitudes seemed to have a strong influence on carer outcomes. The findings highlight the need for further systematic social and informational support for carers to moderate post-care trajectories and improve carer transition.

Keywords

dementiacarersqualitativebereavementsupport
Type
Article
Information
Ageing & Society , Volume 40 , Issue 11 , November 2020 , pp. 2429 - 2447
Copyright
Copyright © Cambridge University Press 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alzheimer's Disease International (2012) World Alzheimer Report: Overcoming the Stigma of Dementia. London: Alzheimer's Disease International.Google Scholar
Aneshensel, CS, Botticello, AL and Yamamoto-Mitani, N (2004) When caregiving ends: the course of depressive symptoms after bereavement. Journal of Health and Social Behaviour 45, 422–440.CrossRefGoogle ScholarPubMed
Australian Institute of Health and Welfare (2012) Dementia in Australia. Canberra: Australian Institute of Health and Welfare.Google Scholar
Bradley, EH, Prigerson, H, Carlson, MA, Cherlin, E, Johnson-Hurzeler, R and Kasl, SV (2004) Depression among surviving caregivers: does length of hospice enrolment matter? American Journal of Psychiatry 161, 2257–2262.CrossRefGoogle Scholar
Bradshaw, C, Atkinson, S and Doody, O (2017) Employing a qualitative description approach in health care research. Global Qualitative Nursing Research 4, 1–8.CrossRefGoogle ScholarPubMed
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101.CrossRefGoogle Scholar
Brodaty, H and Donkin, M (2009) Family caregivers of people with dementia. Dialogues in Clinical Neuroscience 11, 217–228.Google ScholarPubMed
Casler, K, Bickel, L and Hackett, E (2013) Separate but equal? A comparison of participants and data gathered via Amazon's MTurk, social media, and face-to-face behavioral testing. Computers in Human Behavior 29, 2156–2160.CrossRefGoogle Scholar
Chan, D, Livingston, G, Jones, L and Sampson, EL (2013) Grief reactions in dementia carers: a systematic review. International Journal of Geriatric Psychiatry 28, 1–17.CrossRefGoogle ScholarPubMed
Crespo, M, Piccini, AT and Bernaldo-de-Quirós, M (2013) When the care ends: emotional state of Spanish bereaved caregivers of persons with dementia. Spanish Journal of Psychology 16, e97, 1–8.CrossRefGoogle Scholar
Cronin, P, Hynes, G, Breen, M, McCarron, M, McCallion, P and O'Sullivan, L (2015) Between worlds: the experiences and needs of former family carers. Health and Social Care in the Community 23, 88–96.CrossRefGoogle ScholarPubMed
Cuijpers, P (2005) Depressive disorders in caregivers of dementia patients: a systematic review. Aging and Mental Health 9, 325–330.CrossRefGoogle ScholarPubMed
Daly, L, McCarron, M, Higgins, A and McCallion, P (2013) ‘Sustaining place’ – a grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds. Journal of Clinical Nursing 2, 501–511.CrossRefGoogle Scholar
Donnellan, WJ, Bennett, KM and Soulsby, LK (2015) What are the factors that facilitate or hinder resilience in older spousal dementia carers? A qualitative study. Aging and Mental Health 19, 932–939.CrossRefGoogle ScholarPubMed
Guest, G, Bunce, A and Johnson, L (2006) How many interviews are enough? An experiment with data saturation and variability. Field Methods 18, 59–82.CrossRefGoogle Scholar
Hebert, RS, Qianyu, D and Schulz, R (2006) Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: findings from the REACH study. Journal of Palliative Medicine 9, 683–693.CrossRefGoogle ScholarPubMed
Hovland-Scafe, CA and Kramer, BJ (2016) Preparedness for death: how caregivers of elders with dementia define and perceive its value. The Gerontologist 57, 1093–1102.Google Scholar
Jäckle, A, Roberts, C and Lynn, P (2006) Telephone versus face-to-face interviewing: mode effects on data quality and likely causes. Report on Phase II of the ESS-Gallup Mixed Mode Methodology Project. Institute for Social and Economic Research, University of Essex, Colchester, UK, Working Paper.Google Scholar
Jamshed, S (2014) Qualitative research method – interviewing and observation. Journal of Basic and Clinical Pharmacy 5, 87–88.CrossRefGoogle ScholarPubMed
Kenny, C, Sarma, KM and Egan, J (2012) An interpretive phenomenological account of the experiences of family carers of the elderly. Irish Journal of Psychology 33, 199–214.CrossRefGoogle Scholar
Larkin, M (2009) Life after caring: the post-caring experiences of former carers. British Journal of Social Work 39, 1026–1042.CrossRefGoogle Scholar
Lewis, LF (2015) Caregiving for a loved one with dementia at the end of life: an emergent theory of rediscovering. American Journal of Alzheimer's Disease and Other Dementias 30, 488–496.CrossRefGoogle ScholarPubMed
Mattock, S and McIntyre, A (2016) Exploring the role of occupation for spouse-carers before and after the death of a spouse with dementia. British Journal of Occupational Therapy 79, 69–77.CrossRefGoogle Scholar
McCann, TV, Bamberg, J and McCann, F (2015) Family carers’ experience of caring for an older parent with severe and persistent mental illness. International Journal of Mental Health Nursing 24, 203–212.CrossRefGoogle ScholarPubMed
Moniz-Cook, E, Vernooij-Dassen, M, Woods, B and Orrell, M (2011) Psychosocial interventions in dementia care research: the INTERDEM manifesto. Aging and Mental Health 15, 283–290.CrossRefGoogle ScholarPubMed
Morgan, JA, Jorm, FA and Mackinnon, JA (2013) Internet-based recruitment to a depression prevention intervention: lessons from the Mood Memos study. Journal of Medical Internet Research 15, e31.CrossRefGoogle ScholarPubMed
Morris, SM, King, C, Turner, M and Payne, S (2015) Family carers providing support to a person dying in the home setting: a narrative literature review. Palliative Medicine 29, 487–495.CrossRefGoogle ScholarPubMed
Mosquera, I, Vergara, I, Larrañaga, I, Machón, M, Río, M and Calderón, C (2016) Measuring the impact of informal elderly caregiving: a systematic review of tools. Quality of Life Research 25, 1059–1092.CrossRefGoogle ScholarPubMed
Nay, R, Bauer, M, Fetherstonhaugh, D, Moyle, W, Tarzia, L and McAuliffe, L (2015) Social participation and family carers of people living with dementia in Australia. Health and Social Care in the Community 23, 550–558.CrossRefGoogle ScholarPubMed
O'Dwyer, ST and Moyle, W (2014) Using Google Adwords to recruit family carers of people with dementia. Australasian Journal on Ageing 33, 128–131.CrossRefGoogle ScholarPubMed
Pearlin, LI, Mullan, JT, Semple, SJ and Skaff, MM (1990) Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist 30, 583–594.CrossRefGoogle ScholarPubMed
Pinquart, M and Sorensen, S (2003) Differences between caregivers and non-caregivers in psychological health and physical health: a meta-analysis. Psychology and Aging 18, 250–267.CrossRefGoogle Scholar
Pinquart, M and Sorensen, S (2006) Helping caregivers of persons with dementia: which interventions work and how large are their effects? International Psychogeriatrics 18, 577–595.CrossRefGoogle ScholarPubMed
Prince, M, Ali, G-C, Guerchet, M, Prina, AM, Albanese, E and Wu, Y-T (2016) Recent global trends in the prevalence and incidence of dementia, and survival with dementia. Alzheimer's Research and Therapy 8, 23.CrossRefGoogle ScholarPubMed
Prince, M, Wimo, A, Guerchet, M, Ali, G-M, Wu, Y-T, Prina, M and Alzheimer's Disease International (2015) World Alzheimer Report 2015. The Global Impact of Dementia: An Analysis of Prevalence, Incidence, Cost and Trends. London: Alzheimer's Disease International.Google Scholar
Rahman, R (2015) Comparison of telephone and in-person interviews. Interdisciplinary Undergraduate Research Journal 2015, Spring, 10–13.Google Scholar
Ryan, GW and Bernard, HR (2003) Techniques to identify themes. Field Methods 15, 85–109.CrossRefGoogle Scholar
Schulz, R, Boerner, K, Shear, K, Zhang, S and Gitlin, LN (2006) Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. American Journal of Geriatric Psychiatry 14, 650–658.CrossRefGoogle ScholarPubMed
Schulz, R, Mendelsohn, AB, Haley, WE, Mahoney, D, Allen, RS, Zhang, S, Thompson, L and Belle, SH (2003) End-of-life care and the effects of bereavement on family caregivers of persons with dementia. New England Journal of Medicine 349, 1936–1942.CrossRefGoogle ScholarPubMed
Shuter, P, Beattie, E and Edwards, H (2014) An exploratory study of grief and health-related quality of life for caregivers of people with dementia. American Journal of Alzheimer's Disease and Other Dementias 29, 379–385.CrossRefGoogle ScholarPubMed
Stuckey, JC (2001) Blessed assurance: the role of religion and spirituality in Alzheimer's disease caregiving and other significant life events. Journal of Aging Studies 15, 69–84.CrossRefGoogle Scholar
Sturges, JE and Hanrahan, KJ (2004) Comparing telephone and face-to-face qualitative interviewing: a research note. Qualitative Research 4, 107–118.CrossRefGoogle Scholar
Tong, A, Sainsbury, P and Craig, J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19, 349–357.CrossRefGoogle ScholarPubMed
Tremont, G and Davis, JD (2014) The role of caregivers in the treatment of patients with dementia. In Noggle, CA and Dean, RS (eds), The Neuropsychology of Cortial Dementias. New York, NY: Springer, pp. 393–422.Google Scholar
Ume, EP and Evans, BC (2011) Chaos and uncertainty: the post-caregiving transition. Geriatric Nursing 32, 288–293.CrossRefGoogle ScholarPubMed
Vick, JB, Ornstein, KA, Szanton, SL, Dy, SM and Wolff, JL (2019) Does caregiving strain increase as patients with and without dementia approach the end of life? Journal of Pain and Symptom Management 57, 199–208.e2. https://www.sciencedirect.com/science/article/pii/S0885392418310650.CrossRefGoogle ScholarPubMed
Wilks, SE, Little, KG, Gough, HR and Spurlock, WJ (2011) Alzheimer's aggression: influences on caregiver coping and resilience. Journal of Gerontological Social Work 54, 260–275.CrossRefGoogle ScholarPubMed
Wilson, V (2012) Research methods: interviews. Evidence Based Library and Information Practice 7, 96–98.CrossRefGoogle Scholar
Yuan, P, Bare, GM, Johnson, OM and Saberi, P (2014) Using online social media for recruitment of Human Immunodeficiency Virus-positive participants: a cross-sectional survey. Journal of Medical Internet Research 16, e117.CrossRefGoogle ScholarPubMed