Identifying Training Needs for Informal Caregivers to Support Activity and Mobility for Community-Dwelling Individuals with Cognitive and Physical Impairments




0000-0003-3739-0762 (Wu, Kolin)
0009-0005-3267-5736 (Camp, Kathelene)

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Background: With the aging population and the rise in disabilities, there is a growing need for caregiving. In the United States, an overwhelming 83% of older adults receive support from family members, friends, or unpaid caregivers, with almost half of these caregivers aiding individuals with Alzheimer's or other types of dementia. As cognitive decline progresses to the middle and late stages, caregivers play an increasingly critical role in tasks such as feeding, bathing, transferring, and providing mobility assistance. However, informal caregivers usually lack the formal training that professional caregivers in care facilities undergo to carry out these tasks effectively. This study aims to hold focus groups to identify the needs of informal caregivers of persons with dementia in order to develop and deliver support training. Methods: Researchers conducted a focus group using members from a dementia caregiver support group. The specialists in dementia care and mobility worked together collaboratively to develop the topic guide. The guide aimed to explore participants' experiences with the physical and mental challenges of caregiving for persons with dementia. It also aimed to uncover the aspects of their care that held the greatest challenge and to identify areas for potential improvement in their care or condition. Results: A total of six participants were engaged in two focus groups. Through analyzing transcripts from these groups, several main themes have emerged: understanding how relationship influences the role of a caregiver, challenges regarding specific conditions and needs, mobility challenges, reliable strategies and resources, and the caregiver burden. Participants expressed the need for different options to include online and in-person training- with a potential need for individualized attention. Conclusions: The results of this study offer insights into research priorities in dementia care. These findings have played a crucial role in shaping the content of developing workshops and courses that aim to address the mobility and activity needs of the patient while considering their informal caregiver’s burden.