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Nonsupport in Dementia Caregivers: Negative Interactions
A second problem for caregivers in gaining support was negative interaction with family or friends. Types of negative interactions included: disparaging comments that belittled a caregiver's experience, conflict between the caregiver and others in their appraisal of the care recipient's health status, criticism of the caregiver's decisions in caring for the care recipient, and spillover from longstanding conflict and issues in the family history.
Disparaging comments: One woman felt disparaged and unable to express her views when a friend in the church dismissed her concern that support for the poor was inadequate while elected members of the government received pay increases. This caregiver experienced severe poverty and heavy demands arising from her responsibility to care for her two young grandchildren in addition to her husband who had dementia. The lack of recognition of her situation led to conflict with her friend: "I was pretty uptight over something that had happened with Social Services. I brought up the subject...'That listen, people are not getting enough financial assistance.' Now this lady also has someone who is within the government, an MP [Member of Parliament], and I had said something to her...about MPs getting the big raise and the poor not getting anything...I was just shut right out."
Conflict in appraisal of the care recipient's health status: Often conflict occurred over judgement of the health status of the care recipient. In one family, all but the caregiver felt the care recipient was functioning very poorly and required admission to a continuing care facility. Because the family disagreed with the caregiver's decision to care for her grandfather in her home, they refused to help her. In a second family, the caregiver felt her husband's family denied his illness, blamed her husband for his emerging negative behaviour, and withdrew from social contact despite her efforts to interpret his behaviour as a reflection of his dementia. As a result of this dissonance, relationships that were formerly close were disrupted: "I guess it's denial...there's just no help there. They don't want to have Dave [a pseudonym] around. Boy that hurts. He was the uncle that was supposedly the special one, he was the one that did everything for all the nieces and nephews. They accepted all his help."
Criticism: Several caregivers experienced criticism from family members. One caregiver was afraid to ask for assistance because she thought her relatives would interpret this as evidence that she was an inadequate caregiver and unable to cope. Another found that her family reacted with joking remarks such as 'Can't you do that?' or 'Are you losing it?' when she asked for assistance. A third example comes from a woman whose brother blamed her for withdrawing from the family and was critical of her husband who had dementia: "I said, '....the doctor suspects he has Alzheimer's, and I just ask that you let the kids know'. I went away in tears because my brother just went up one side of my spine and down the other just tearing into me about withdrawing from the family."
Spillover of conflict from other issues: When there is ongoing or longstanding family conflict this continues to spillover into the caregiver's experience, increasing the demand they experience and interfering with support they might otherwise have had. One woman experienced conflict with her daughter-in-law, who had a difficult childhood and adolescence and was also having problems parenting her own teenagers. This conflict interfered with support the caregiver might otherwise have had from her son and daughter-in-law, and required additional effort to maintain a relationship with her daughter-in-law and grandchildren: "She is always going to be down on somebody...she's had a crazy home life...they don't talk to relatives for years...it really affected me. Then [I] finally said 'I've got to deal with it.'"
Consequences of negative interactions
For some women a consequence of negative interactions was loss of contact with relatives. One woman had formerly been the hub of family celebrations and interaction, but lost that family contact when the family withdrew as a result of disagreements over her decision to care for her grandfather in her home: "I've always been this - the nucleus of the family, the social convenor...who always pulls everybody together and because they [relatives] have had difficulty with even facing us, that's all falling apart."
Coexistence of support and nonsupport
In our data, support and nonsupport coexisted in the same relationships. In some relationships, support and nonsupport coexisted concurrently. One caregiver who received some assistance from her son and daughter-in-law nevertheless found that they were critical of the way she handled her affairs and expected her to be more dependent than she wished, e.g. advising them each time she went out: "And they expect you...to be dependent...If he [son] phones me and says I tried to phone you two or three times and you weren't home, 'Now where were you?' Now do I have to report in? 'Yes, you should, I worry about you.'"
In other relationships, support and nonsupport alternated over time. A brother and sister-in-law of one caregiver withdrew their support but, when they eventually accepted the diagnosis of dementia, established some contact and provided support: "My brother and his wife came over...on the day that I had gotten the phone call...that I had to have a [breast] biopsy. Ethel then said if you want John to stay with us or we can help you, we'd be glad to...maybe they would then see what the score was...they were good to him."
The presence of nonsupport in the experience of family caregivers demonstrates the importance of detailed assessment of potential sources of support. The existence of family and friends in caregivers' social networks does not mean that adequate support is available. Because support and nonsupport may coexist in the same relationship, and many potential supporters are kin, eliminating contact with persons who are sources of negative or nonsupportive interactions may be impossible or result in loss of existing support for a caregiver. When negative interactions are a component of nonsupport, caregivers may benefit from assistance in developing conflict resolution and support seeking skills. Given the role of unmet expectations in nonsupport, therapists need to assess the caregivers' personal expectations and the salience of their caregiving identity. With this information therapists can help caregivers build connections that supplement the support that is available to them while caregivers adjust their expectations of how and from whom they should receive support.
- Neufeld, A.; Harrison, M.J.; Unfulfilled expectations and negative interactions: nonsupport in the relationships of women caregivers; Journal of Advanced Nursing; Feb2003; Vol. 41 Issue 4
Reflection Exercise #9
The preceding section contained information
about nonsupport through negative interactions in dementia caregivers. Write three case study examples
regarding how you might use the content of this section in your practice.
Peer-Reviewed Journal Article References:
Batthyány, A., & Greyson, B. (2021). Spontaneous remission of dementia before death: Results from a study on paradoxical lucidity. Psychology of Consciousness: Theory, Research, and Practice, 8(1), 1–8.
Kessler, E.-M. (2021). Dementia worries and cognitive complaints in a long-life society. GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry, 34(1), 1–3.
Maxfield, M., & Greenberg, J. (2021). Anticipated stigma and dementia-related anxiety in middle-aged and older adults. GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry, 34(1), 13–22.
According to Neufeld, why is it difficult for a caregiver to eliminate contact with persons who are sources of negative or nonsupportive interactions?
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