Experiences of Family Caregivers and the Use of Non-Pharmacologic Care Strategies for Community Dwelling Older Adults with Dementia

Abstract

People living with dementia (PLWD) often experience behavioral and psychological symptoms of dementia (BPSD) which are burdensome to those diagnosed, their families, and society. Many non-pharmacologic interventions have demonstrated efficacy in reducing BPSD in research but have had limited uptake in the community, possibly due to lack of feasibility and limited acceptance by PLWD and their family caregivers. Acutherapy and weighted blankets are non-pharmacologic interventions that have improved outcomes among older adults, but few studies have focused on PLWD and BPSD. The purpose of this research was to explore the potential of acutherapy and weighted blankets as non-pharmacologic interventions to reduce BPSD in PLWD. The research presented in this 3-paper dissertation was guided by 6 specific aims: 1. Identify, examine, and synthesize the state of the science relating to the effects of acutherapy on BPSD. (Paper 1) 2. Explore perspectives of family caregivers of community dwelling older adults with Alzheimer’s disease or related dementias (ADRD) regarding BPSD and use of non-pharmacologic interventions for BPSD management. (Paper 2) 3. Explore perspectives of family caregivers of community dwelling older adult family members with ADRD regarding changes in their caregiving experiences, BPSD displayed by their relatives with ADRD and BPSD management strategies used during the COVID-19 pandemic. (Paper 2) 4. Explore initial perceptions of family caregivers regarding weighted blankets as an in-home care strategy for community dwelling PLWD following a brief description and visual presentation of weighted blankets. (Paper 3) 5. Examine feasibility and acceptability of a virtually delivered, in-home weighted blanket intervention for older adults with ADRD living in the community as perceived by the family caregiver and the person with ADRD. (Paper 3) 6. Examine feasibility of collecting outcome measures of BPSD, cognitive function, and quality of life of care recipients with ADRD, and well-being and self-reported health status of family caregivers. (Paper 3) Aims were addressed using: a scoping review methodology (Aim 1); a qualitative approach using semi-structured interviews with 21 family caregivers living with community dwelling PLWD (Aims 2, 3, and 4); a prospective, within subjects, pre-post design study with 21 community dwelling PLWD and their family caregivers (Aims 5 and 6). This dissertation research had 6 key findings: 1) Acutherapy is a safe non-pharmacologic care strategy for PLWD and a potential treatment for BPSD, but additional research is needed to determine efficacy; 2) The caregiving experience of family caregivers of community dwelling PLWD was described as an interdependent partnership between the caregiver and the PLWD; 3) Family caregivers and PLWD experienced challenges to in-home care prior to the COVID-19 pandemic, many of which were compounded by it; 4) The virtually delivered, in-home weighted blanket intervention was feasible and acceptable to PLWD and their family caregivers; 5) Collecting outcome measures of care recipient cognitive function, caregiver well-being and caregiver self-reported health was feasible; 6) Collecting outcome measures of care recipient BPSD and quality of life was feasible through measures completed by caregiver report, but not by care recipient self-report. The efficacy of feasible and acceptable care strategies for community dwelling PLWD must be determined to promote broader uptake by clinicians, support service providers, and families. As BPSD are overwhelming for PLWD, their families, and society, we are in dire need of evidence-based non-pharmacological interventions to reduce the burden and improve the quality of life of PLWD and their families.