Hostname: page-component-78c5997874-s2hrs Total loading time: 0 Render date: 2024-11-18T22:17:23.541Z Has data issue: false hasContentIssue false
  • English
  • Français

Life after care: psychological adjustment to bereavement in family carers of people with dementia

Published online by Cambridge University Press:  09 December 2015

Aggeliki Vlachogianni ,
Areti Efthymiou ,
Dimitra Potamianou ,
Paraskevi Sakka  and
Vasiliki Orgeta
Aggeliki Vlachogianni
Affiliation:
Athens Association of Alzheimer's Disease and Related Disorders, Athens, Greece
Areti Efthymiou
Affiliation:
Athens Association of Alzheimer's Disease and Related Disorders, Athens, Greece
Dimitra Potamianou
Affiliation:
Athens Association of Alzheimer's Disease and Related Disorders, Athens, Greece
Paraskevi Sakka
Affiliation:
Athens Association of Alzheimer's Disease and Related Disorders, Athens, Greece
Vasiliki Orgeta*
Affiliation:
Division of Psychiatry, University College London, UK
*
Correspondence should be addressed to: Dr Vasiliki Orgeta, University College London, Division of Psychiatry (formerly Mental Health Sciences Unit), 6th Floor, Maple House, 149 Tottenham Court Road, London W1T 7NF, UK. Phone: 0044-020-7679-9294; Fax: 0044-020-7679-9426. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Despite well-documented evidence of the psychological effects of caring for a relative with dementia, little is known about the bereavement experiences of family carers. The aim of this study was to explore the key psychological changes associated with carers’ adjustment to bereavement and “life after care.”

Methods:

All carers taking part were recruited from a day care center, providing specialist services to people with dementia. We asked carers to describe the key changes associated with psychological adjustment to bereavement through semi-structured qualitative in-depth interviews. Strategies carers used to cope with and adapt to their new role were also explored. All data were thematically analysed.

Results:

Thirty-one carers were interviewed. The most frequent emotional reactions to bereavement were feelings of loneliness, loss, void, sadness, anger, and relief. Most carers were able to adapt to their new role, and engaging in pleasant activities was the most frequent strategy used to cope with loss and “life after care.”

Conclusions:

Feelings of loneliness and loss are amongst the key emotional reactions shaping carers’ adjustment to bereavement. Most carers are able to adapt to loss; however, a minority experience increased psychological distress after the death of their loved one. A small percentage of carers continues caring for other dependants. Further research is required to identify how carers of people with dementia adapt to bereavement and how this increasing number of individuals can be best supported.

Keywords

dementia carerscaringpost-caringqualitative researchbereavementserial caring
Type
Research Article
Information
International Psychogeriatrics , Volume 28 , Issue 5 , May 2016 , pp. 815 - 823
Copyright
Copyright © International Psychogeriatric Association 2015 

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

Almberg, B. E., Graftstrom, M. and Winbald, B. (2000). Caregivers of relatives with dementia: experiences encompassing social support and bereavement. Aging and Mental Health, 4, 82–89.Google Scholar
Anderson, R., Mikulic, B., Vermeylen, G., Lyly-Yrjanainen, M. and Zigante, V. (2009). Second European Quality of Life Survey Overview. Dublin: European Foundation for the improvement of living and working conditions.Google Scholar
Arksey, H. (2003). People into employment: supporting people with disabilities and carers into work. Health and Social Care in the Community, 11, 283–292.Google Scholar
Bass, D. M. and Bowman, K. (1990). The transition from caregiving to bereavement: the relationship of care-related strain and adjustment to death. The Gerontologist, 30, 35–42.Google Scholar
Bodnar, J. C. and Kiecolt-Glaser, J. K. (1994). Caregiver depression after bereavement: chronic stress isn't over when it's over. Psychology and Aging, 9, 372–380.Google Scholar
Boerner, K., Schulz, R. and Horowitz, A. (2004). Positive aspects of caregiving and adaptation to bereavement. Psychology and Aging, 19, 668–675. doi:2004-21181-012.CrossRefGoogle ScholarPubMed
Bonanno, G. A., Papa, A., Lalande, K., Westphal, M. and Coifman, K. (2004). The importance of being flexible: the ability to both enhance and suppress emotional expression predicts long-term adjustment. Psychological Science, 15, 482–487. doi:10.1111/j.0956-7976.2004.00705.x.CrossRefGoogle ScholarPubMed
Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.Google Scholar
Brown, S. L., Brown, R. M., House, J. S. and Smith, D. M. (2008). Coping with spousal loss: potential buffering effects of self-reported helping behavior. Personality & Social Psychology Bulletin, 34, 849–861. doi:10.1177/0146167208314972.Google Scholar
Burton, A. M., Haley, W. E., Small, B. J., Finley, M. R., Dillinger-Vasille, M. and Schonwetter, R. (2008). Predictors of well-being in bereaved former hospice caregivers: the role of caregiving stressors, appraisals, and social resources. Palliative & Supportive Care, 6, 149–158. doi:10.1017/S1478951508000230.Google Scholar
Chan, D., Livingston, G., Jones, L. and Sampson, E. L. (2013). Grief reactions in dementia carers: a systematic review. International Journal of Geriatric Psychiatry, 28, 1–17. doi:10.1002/gps.3795.Google Scholar
Collins, C., Liken, M. and Kokinakis, C. (1993). Loss and grief among family caregivers of relatives with dementia. Qualitative Health Research, 3, 236–253.Google Scholar
Davies, S. and Nolan, M. (2004). “Making the move”: relatives’ experiences of the transition to a care home. Health and Social Care in the Community, 12, 517–526.Google Scholar
Frank, J. B. (2007). Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis. American Journal of Alzheimers Disease and Other Dementias, 22, 516–527.Google Scholar
Holland, J. M., Currier, J. M. and Gallagher-Thompson, D. (2009). Outcomes from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) program for bereaved caregivers. Psychology and Aging, 24, 190–202.Google Scholar
Jones, P. S. and Martinson, I. M. (1992). The experience of bereavement in caregivers of family members with Alzheimer's disease. Image–the Journal of Nursing Scholarship, 24, 172–176.CrossRefGoogle ScholarPubMed
Kiecolt-Glaser, J. K., Dura, J.R., Speicher, C.E., Trask, O.J. and Glaser, R. (1991). Spousal caregivers of dementia victims: longitudinal changes in immunity and health. Psychosomatic Medicine, 53, 345–362.Google Scholar
Larkin, M. (2009). Life after caring: the post caring experiences of former carers. British Journal of Social Work, 39, 1026–1042.Google Scholar
Lewis, J. and Meredith, B. (1988). Daughters who Care. London: Routledge.Google Scholar
Mahoney, R., Regan, C., Katona, C. and Livingston, G. (2005). Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. American Journal of Geriatric Psychiatry, 13, 795–801. doi:10.1176/appi.ajgp.13.9.795.Google Scholar
Marwit, S. J. and Meuser, T. M. (2002). Development and initial validation of an inventory to assess grief in caregivers of persons with Alzheimer's disease. The Gerontologist, 42, 751–765.Google Scholar
McLaughlin, E. and Ritchie, J. (1994). Legacies of caring: the experiences and circumstances of ex carers. Health and Social Care, 2, 241–253.Google Scholar
Means, R., Richards, S. and Smith, R. (2003). Community Care: Policy and Practice. London: Macmillan Press.Google Scholar
Mestheneos, E., Triantafillou, J. and Kontouka, S. (2004). Eurofamcare: National Background Report for Greece. Athens: Department of health services management, National School for Public Health.Google Scholar
Meuser, T. M. and Marwit, S. J. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist, 41, 658–670.Google Scholar
Mullan, J. T. (1992). The bereaved caregiver: a prospective study of changes in well-being. Gerontologist, 32, 673–683.Google Scholar
Ott, C. H., Sanders, S. and Kelber, S. T. (2007). Grief and personal growth experience of spouses and adult-child caregivers of individuals with Alzheimer's disease and related dementias. The Gerontologist, 47, 798–809. doi:47/6/798.Google Scholar
Papastavrou, E., Kalokerinou, A., Papacostas, S. S., Tsangari, H. and Sourtzi, P. (2007). Caring for a relative with dementia: family caregiver burden. Journal of Advanced Nursing, 58, 446–457.Google Scholar
Parks, S. H. and Pilisuk, M. (1991). Caregiver burden: gender and the psychological costs of caregiving. The American Journal of Orthopsychiatry, 61, 501–509.Google Scholar
Pearlin, L. I., Mullan, J. T., Semple, S. J. and Skaff, M. M. (1990). Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist, 30, 583–594.Google Scholar
Romero, M. M., Ott, C. H. and Kelber, S. T. (2014). Predictors of grief in bereaved family caregivers of person's with Alzheimer's disease: a prospective study. Death Studies, 38, 395–403. doi:10.1080/07481187.2013.809031.CrossRefGoogle ScholarPubMed
Schulz, R., Boerner, K., Shear, K., Zhang, S. and Gitlin, L. N. (2006). Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. American Journal of Geriatric Psychiatry, 14, 650–658. doi:14/8/650.Google Scholar
Schulz, R., Newsom, J., Fleissner, K., Decamp, A. and Nieboer, A. (1997). The effects of bereavement after family caregiving. Aging and Mental Health, 1, 269–282.Google Scholar
Schulz, R. et al. (2001). Involvement in caregiving and adjustment to death of a spouse: findings from the caregiver health effects study. JAMA, 285, 3123–3129. doi:joc10038.Google Scholar
Schulz, R. et al. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. The New England Journal of Medicine, 349, 1936–1942. doi:10.1056/NEJMsa035373.Google Scholar
Schum, J. L., Lyness, J. M. and King, D. A. (2005). Bereavement in late life: risk factors for complicated bereavement. Geriatrics, 60, 18–20, 24.Google Scholar
Shear, K., Frank, E. and Houck, P. (2005). Treatment of complicated grief: a randomized controlled trial. JAMA, 293, 2601–2608.Google Scholar
Triantafillou, J., Mestheneos, E., Prouskas, C., Goltsi, V., Kontouka, S. and Loukisis, A. (2006). Eurofamcare, Services for Supporting Family Carers of Older Dependent People in Europe: Characteristics, Coverage and Usage, Athens: The National Survey Report for Greece.Google Scholar
Wortman, C. B. and Silver, R. C. (2001). The myths of coping with loss revisited. In Stroebe, M. S., Hansson, R. O., Stroebe, W. and Schut, H. (eds.), Handbook of Bereavement Research: Consequences, Coping, and Care (pp. 405–430). Washington, DC: American Psychological Association.Google Scholar