Unseen support: The needs of Alzheimer's disease and related dementias' secondary family caregivers and a way forward.

OBJECTIVES

This study aimed to better understand and identify the needs of secondary caregivers of individuals with memory challenges and explore their role in supporting primary caregivers to inform the development of a tailored intervention for secondary caregivers of people with Alzheimer's disease and related dementias.

METHODS

A complementary, sequential mixed-methods approach was used to achieve the goal. Phase one included an online survey with primary caregivers (N = 10) exploring how secondary caregivers support them and training opportunities. Phase two involved virtual focus groups with secondary caregivers (N = 13) with a semi-immersive virtual reality experience where participants embodied a person with dementia, and discussed their caregiving roles, challenges, and needs.

RESULTS

Primary caregivers identified secondary caregivers as helpful in reducing burden and stress. However, tensions existed due to unclear roles. Secondary caregivers reported emotional challenges and unclear role expectations. Virtual reality was valuable for increasing empathy. Both groups prioritized education in communication and managing challenging behaviors.

CONCLUSIONS

Semi-immersive virtual reality can help prepare secondary caregivers to support primary caregivers and their care recipients in key caregiving skills, while increasing dementia awareness and empathy.

CLINICAL IMPLICATIONS: Tailored interventions incorporating virtual reality may assist secondary caregivers in promoting positive health care outcomes and continuity of care for people with dementia and their primary caregivers.