Alisa Grigorovich, Nira Rittenberg, Talia Dick, Ashley McCann, Amanda Abbott, Andrea Kmielauskas, Valerie Estioko, Sinthusha Kulasingham, Jill I. Cameron; Roles and Coping Strategies of Sons Caring for a Parent With Dementia. Am J Occup Ther 2015;70(1):7001260020. https://doi.org/10.5014/ajot.2016.017715
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© 2020 American Occupational Therapy Association
OBJECTIVE. Little is known about sons’ roles in caring for a parent with dementia. To ensure that interventions and practices appropriately match sons’ needs, we investigated their experiences.
METHOD. A qualitative descriptive approach was used; 20 sons of a parent with dementia participated in semistructured interviews.
RESULTS. Participants reported varied paths to becoming a caregiver, primarily undertaking a care management role and managing by using their own occupational experiences and receiving support from other family members, peers, and private and public community services. They experienced negative consequences such as participation restriction and stress and positive consequences such as feelings of satisfaction. Strategies used to cope included boundary setting and practicing self-care.
CONCLUSION. This study highlights the need to consider sons’ role as care managers for their parent with dementia in community-based settings, as well as their need for education and intervention. Occupational therapy practitioners can use this information to inform their practices and support clients and their families.
How do sons come to take on the caregiving role?
What is the scope of their caregiving role or roles?
What impact does caregiving have on their lives?
What strategies do they use to accomplish caregiving tasks?
How do they cope with the caregiving role?
Can you please describe your caregiving situation?
What kind of help does your family member need?
Does anyone else help you or your family member (paid or unpaid)?
What are the changes that you have experienced over time as a caregiver?
How has providing care affected your own life? Good or bad?
Do you access any supports right now?
Sharing role with family
Using formal care services
Participation in valued activities
So you asked me what my sister’s role is. Her role is probably the softer role of visiting a little more frequently, speaking to [mother] on the phone very regularly, and providing that very regular contact that I don’t do as well. . . . She’s probably more of a friend to my mom, and I’m probably more like a parent. (SDCG2)
[I learned] material facts about what services and processes were out there. And also . . . to sit in a room with a bunch of other people who were in exactly the same situation [makes] you feel less . . . isolated. . . . The information that was provided . . . I’m sure it’s all available on the Internet. But it’s different when it’s presented to you and shared with you in an organized way. (SDCG2)
She [mother] had a tendency to wander in the house, upstairs at night . . . so we put the safety gate in so she couldn’t fall down the stairs. . . . We also installed, just recently, . . . a baby monitor. We put the [transmitter unit with a microphone] in her room, and . . . I have a speaker next to me in my room so I can hear if she’s in distress or anything, or if she’s getting up [during the night]. (SDCG20)
I used to be much more physically active. I still do some fitness . . . but the additional time burden [from caregiving] has prevented me from being able to do that. . . . So it’s negatively influenced my health. . . . Insofar as work goes, yeah, I mean, I’m self-employed, so the additional time that I’m devoting to my mom is lost [work] time. (SDCG6)
Sometimes the relationship has been trying for me on an emotional basis, [but] . . . I think that with my mom it’s become a . . . deeper relationship based on the fact that [we] know each other better. (SDCG18)
I don’t see myself as the caregiver for my mother, because to me a caregiver is a person who gives care. And I’m the person who’s like the administrator. Like I deal with the problems and stuff. But as far as going there and giving her a hug and a kiss every day, that’s not me . . . that’s more my sister. (SDCG2)
Some of these fellows [in the support group] were living with their mother, and I knew that I probably wouldn’t survive that. . . . I felt badly, [but] I knew in my heart that I couldn’t. I wouldn’t be able to cope with that. (SDCG5)
I saw my friends less, no doubt about that, but I was aware that this stuff [caregiving] would be a threat. . . . Enrolling in school, that was a strategy to kind of fight these things [impact of caregiving on well-being] and dig my heels in so I wouldn't get totally swallowed into the caregiving. (SDCG19)
Occupational therapy practitioners focus not only on caregivers' roles in ADL and IADL care but also on their roles in assisting with managerial and organizational tasks.
Occupational therapy practitioners working with families should consider sons’ care roles and assess their needs by investigating their existing skills or abilities.
Occupational therapy practitioners can support son caregivers’ well-being by providing them with dementia-specific information and education about community services, management of problem behaviors, and the use of activity participation as a coping strategy.
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