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Section 15
Nonsupport in Dementia Caregivers: Unmet Expectations

Question 15 | Test | Table of Contents

The role of support from family and friends in assisting caregivers to meet caregiving demands and maintain their health has been well-documented (Chappell & Blandford 1991). Most research has viewed social support as unconditionally positive (Miller & Ray 1994). However, there is evidence that negative interactions such as conflict and dissatisfaction with support are present in caregivers' relationships (Strawbridge & Wallhagen 1991, Semple 1992, Merrill 1996, 1997, Fudge et al. 1997) and may be embedded within supportive relationships (Tilden & Galyen 1987, Shuster et al. 1990).

Negative interactions have an influence on caregivers' psychological health (Rook 1990, Rauktis et al. 1995, Redinbaugh et al. 1995, Braithwaite 1996). Strawbridge and Wallhagen (1991) found that serious family conflict among caregivers of frail parents was associated with higher perceived burden and poorer mental health, even when the quality of the caregiver's relationship with the care recipient, caregiving tasks, income, gender and age were taken into account. This finding is consistent with research on the social experience of adults who were not caregivers. In a study of older adults, Rook (2001) found that an increase in daily negative exchanges over a 1-year period was associated with depression.

The purpose of this research was to describe women's experience of nonsupport while caring for a family member with dementia and to identify types of nonsupport in relationships with family and friends. Congruent with our definition of support (Funch et al. 1986), nonsupport was defined as appraisal of dissatisfaction with support in relationships.

Nonsupport: problems in realizing support
Women experienced two difficulties in realizing support. An unmet expectation for support was the most pervasive difficulty and was influenced by the type of relationship between the caregiver and potential helper. Negative interactions, particularly with kin, were also present and problematic for the women.

Unmet expectations
Women's expectations were an implicit basis for their appraisal of support. They expected support from others in three types of relationships: kinship relationships, reciprocal relationships with either a friend or kin in which they had previously provided assistance, and relationships with a friend who had similar experience in caring for a relative. When expectations for support were unmet, women described the relationships as nonsupportive. Nonsupport arising from unmet expectations included: unfulfilled or missing offers of assistance, unmet expectations for social interaction, mismatched aid, or incompetence on the part of the potential helper.

Unfulfilled or missing offers: Nonsupport occurred when potential helpers offered assistance, for example, to visit or run errands, but did not follow through with the offer. One woman described her disappointment when promised support did not materialize.
So many times people have said, 'Oh I'm going to have tea with you one of these days.' Or 'So and so and I are going to come and visit you and my husband will stay with your husband and you and I will go shopping.' But it never happens. So you lose faith in people after a while. Women preferred that support be offered so that they would not need to request assistance. Unfulfilled offers of support were particularly disappointing, as the women had anticipated assistance without the cost of asking for support.

Unmet expectations for social interaction: Some caregivers were disappointed that expectations for ongoing social interaction with friends were not met. They lost contact with friends who could not relate to behaviour changes in the care recipient. When this happened the women felt excluded and isolated: "They [friends] don't know what to say. And when they do come and John seems disinterested or he's not talking or he's talking in a way that they can't understand, they just hesitate to come back. You're just completely overlooked when it comes to something that is couple-orientated. There's no longer two of you to entertain people." Sometimes expected contact with friends was not maintained as a result of heavy caregiving demands or the demands and illness experiences of their friends.

Mismatched aid: In other cases, assistance was given but the form of assistance was a poor fit for the needs of the caregiver and did not address her priorities. One woman who cared for her grandmother wanted her mother to assist with grocery shopping. However, the mother chose to provide social interaction for the grandmother: "What she'll do is she'll do things that she likes doing. Like my mom likes bingo, so she takes my grandmother to bingo, because she likes doing that. But it probably would not occur to her to take her grocery shopping."

Incompetence: Another form of nonsupport occurred when helpers gave assistance but the caregiver felt the aid they provided was not adequate for the care recipient. For example, some volunteer visitors were unable to handle appropriately the environment of a dementia unit. In another example, a visitor from the church took the care recipient out for such a short time that it provided no respite for the caregiver. Some sources of support required a lot of direction in how to provide support as one woman commented: "But if he [church friend] goes with me for groceries, he keeps coming up to me every 5 minutes, 'What do you need now?'. He's always hurrying me because everything has to be done in a very business-like manner."

Consequences of unmet expectations
When support was not available from expected sources some women modified their expectations. They recognized the limited resources and possible negative consequences for the helper. One woman reduced her expectations for support because she anticipated that her daughter-in-law would object, creating marital problems for her son. In other examples, caregivers decreased their expectations of adult children who had heavy responsibilities for parenting or work, were geographically distant, or had limited time or financial resources. This woman modified her expectations for support from her two sons: "Ron, he has left the city. Jim is very busy with his job and he's got evening classes, he wants to work himself up and I give him credit for that. So they don't really have time for me.
- 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

Personal Reflection Exercise #8
The preceding section contained information about nonsupport through unmet expectations in dementia caregivers.  Write three case study examples regarding how you might use the content of this section in your practice.
Reviewed 2023

Update
Influence of Sense of Competence, Empathy and Relationship Quality on Burden in Dementia Caregivers: A 15 Months Longitudinal Study

Kieboom, R. V. D., Mark, R., Snaphaan, L., Assen, M. V., & Bongers, I. (2023). Influence of Sense of Competence, Empathy and Relationship Quality on Burden in Dementia Caregivers: A 15 Months Longitudinal Study. Journal of applied gerontology : the official journal of the Southern Gerontological Society, 42(3), 464–473. https://doi.org/10.1177/07334648221138545


Peer-Reviewed Journal Article References:
Martin, K., Lang, F. R., Rupprecht, R., & Nömer, J. (2021). Dementia worry and the perception of personal risk: A longitudinal study. GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry, 34(1), 23–30.

Maxfield, M., Cui, R., Roberts, J. R., & Fiske, A. (2021). Interest in dementia testing: Family history, dementia-related anxiety, and coping. GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry, 34(1), 5–11.

Wilson, R. S., Barnes, L. L., Rajan, K. B., Boyle, P. A., Sytsma, J., Weuve, J., & Evans, D. A. (2018). Antecedents and consequences of unawareness of memory impairment in dementia. Neuropsychology, 32(8), 931–940. 

QUESTION 15
What were five sources of nonsupport arising from unmet expectations? To select and enter your answer go to Test.

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