Family caregivers caring for relatives with dementia : pre- and post-death experiences

The purpose of this thesis was to describe caregiving relatives' experiences pre- and post-death of a relative with dementia disease. This thesis involved 52 caregivers for demented elderly persons and 66 non-caregivers for non-demented elderly persons who were included in the Kungsholmen Project, a population-based study of people aged 75 years and over. The Burden Questionnaire (Grafström et al. (1992), the Burnout Measure (Pines et al. 1981), the Patient Hassles Scale (Kinney & Stephens (1991), and the Nursing Home Hassles Scale (Stephens et al. 1991) were used in this thesis. The Stress Process Model (Pearlin et al. 1990) was applied in order to present the different stressors in a caregiver's career.

Study 1: There was not always a difference in strain between the caregivers and the non-caregivers. In a cross-gender comparison, females' total experiences proved to be the most strained. When controlling for gender, the females did not suffer uniformly. Within a same-gender group of male caregivers, the results indicate that the males caring for demented elderly persons experienced a lack of positive outlook and a limitation of social support.

Study 2: In the caregiver group, older wives and daughters were the most likely to report burnout in their lives. Limitations in social life, poor health and a lack of positive outlook on caring were the most important factors when explaining burnout.

Study 3: The caregivers in this study used different coping strategies, depending on whether they felt burned-out or not. Those who experienced burnout used emotion-focused strategies. The caregivers who did not experience burnout, however, used problem-focused strategies more often. Furthermore, the caregivers who did not feel burnout used the emotion-focused strategy of acceptance, frequently in combination with the problem-focused strategies of seeking information and seeking social support. The elderly person's living place (home or institution) in this study did not appear to have any significant impact.

Study 4: The caregivers in this study who had their demented elderly relatives institutionalized experienced patient hassles (cognitive, behaviour, basic ADL) and nursing home hassles (caregiver-staff, patient-staff, practical/logistical). The analysis showed the nursing home hassles to be the stressors explaining variance in burnout.

Study 5: Bereaved caregivers who reported more positive appraisal (pre-death) were likely to feel relieved after the death. They were also satisfied with their support. Caregivers expressed relief more often when the same person(s) helped them pre- and post-death. Caregivers who reported being exhausted and having a breakdown during the caregiving process expressed negative thoughts and guilt in the post-death phase. Finally, caregivers in the detachment phase who said they were able to say good-bye to their relatives often expressed that they were ready to go on with their lives.

List of scientific papers

I. Almberg B, Jansson W, Grafström M, Winblad B (1998). Differences between and within genders in caregiving strain: a comparison between caregivers of demented and non-caregivers of non-demented elderly people. J Adv Nurs. 28(4): 849-858.
https://pubmed.ncbi.nlm.nih.gov/99045139

II. Almberg B, Grafström M, Winblad B (1997). Major strain and coping strategies as reported by family members who care for aged demented relatives. J Adv Nurs. 26(4): 683-691.
https://pubmed.ncbi.nlm.nih.gov/98016598

III. Almberg B, Grafström M, Winblad B (1997). Caring for a demented elderly person--burden and burnout among caregiving relatives. J Adv Nurs. 25(1): 109-116.
https://pubmed.ncbi.nlm.nih.gov/97157739

IV. Almberg B, Grafström M, Krichbum K, Winblad B. The interplay of institution and family caregiving: Relations between patient hassles, nursing home hassles and caregivers burnout. International Journal of Geriatric Psychiatry. [Accepted]

V. Almberg B, Grafström M, Winblad B. Caregivers of relatives with dementia: experiences ecompassing social support and bereavement. Journal of Aging & Mental Health. [Accepted]