The Occupational Challenges of and Supports for Individuals Providing Care to People With Dementia

SIGNIFICANCE: As life expectancy and rates of dementia are increasing, caregiver demand is affected. It is therefore important to understand the caregiving role from the perspective of the caregiver. In this study, we offer insight to practitioners so they can better support and address caregivers’ needs.

INNOVATION: Currently in the literature there is limited information applying occupational therapy to caregiver health and well-being. This study suggests that specific adaptations and accommodations may serve as coping mechanisms for caregivers. In this study, we attempted to answer the following research question: What are the occupational challenges of and supports for individuals providing care to people with dementia?

Due to the impact that caregiving responsibilities can have on one’s psychological health and occupational functioning, it is important to understand the experiences of caregivers of people with dementia. Areas in need of investigation include common themes among caregivers who provide support and assistance to people with dementia throughout the continuum of care, and potential interventions for managing stress. Currently, there is limited information in the literature regarding the role of occupational therapy addressing caregiver well-being. Additional research can provide practitioners with insight on caregivers’ challenges and supports and can help researchers work toward creating effective intervention strategies if needed and support current wellness practices.

METHOD: The study was a qualitative, phenomenological-based study in which we interviewed caregivers of people with dementia and investigated the caregiving role and experiences of—as well as the use of care supports by—the caregivers. Data were gathered through interviews on the basis of the Assessment of Occupational Functioning—Collaborative Version. Additionally, to solicit deeper understanding of the caregivers’ experiences, open-ended questions specific to caregiving were developed and used. Interviews were transcribed verbatim. Constant comparative analyses of the transcripts were completed between and within caregivers. Interviews took place at various confidential locations that the interviewee identified as convenient. Area support groups were contacted and asked to distribute information about the study. Caregivers were provided with the researchers’ contact information and were asked to contact them if interested. Participants included 2 men and 4 women aged 60 to 93 yr who all had direct caregiving experience.

RESULTS: Five major themes identified were motivation, support, caregiving role, guilt, and strategies. These themes helped to better elucidate and conceptualize the caregiving role and all that it entails. The struggles that some of the caregivers faced, including role transitions, occupational challenges, and relationship changes, should be further investigated to better understand the complexity and integration of such roles.

CONCLUSION: Occupational therapy has a potential role in assisting caregivers to identify adaptive strategies to promote caregiver wellness. Additionally, current literature primarily addresses adaptations in managing care recipient needs. In this study, we uncovered examples of caregivers utilizing accommodations to further preserve the dignity and autonomy of the care recipient. Limitations affecting generalizability included voluntary participants from a small geographic location utilizing the same support services.