Surviving and Thriving: Qualitative Results from a Multi-Year, Multidimensional Intervention to Promote Well-Being among Caregivers of Adults with Dementia

Abstract

(1) Introduction: Caring for an adult with dementia is both challenging and rewarding. Research indicates that community-based, social support, and/or arts engagement interventions can play a key role in ameliorating the negative outcomes associated with caregiving while enhancing its more positive attributes. This study explores the psychosocial outcomes experienced by dementia caregivers who participated in a multi-year, multidimensional intervention aimed at promoting caregiver and care recipient well-being. This intervention included bringing caregivers and people with Alzheimer’s disease or related dementias (ADRD) to local symphony performances, hosting a social reception prior to the performance, and assessing the outcomes of participation for both caregiver and the care recipient. (2) Materials, Methods, and Analysis: Qualitative data from participant phone interviews (n = 55) as well as focus groups are analyzed using thematic analysis from a phenomenological perspective. (3) Results: Across three years of participation, caregivers reported three main program benefits: relationship building (both with other participants as well as within the broader community); restored humanity (experiencing a greater sense of personal dignity and momentary return to normalcy), and positivity (experiencing positive emotions during the program). (4) Discussion: These findings point to the value of creating caregiver programming that brings together multiple dimensions of successful interventions in order to enhance caregiver experiences and positive intervention outcomes.

Understanding ‘value’ in the context of community‐based interventions for people affected by dementia: A concept analysis

“…van Haeften‐Van Dijk et al (2016), p. 620) measured “change in health over time to assert value”, following participants over 12 months, illustrating the view that time is a mandatory criterion for suggesting causation of outcomes, and thus value (Thiese, 2014). Others further the point, implying the need to measure change longitudinally to properly observe outcomes (Faw et al, 2021), and exploration of value needs to be “sensitive…to detect change over time” (Ratcliffe et al, 2019, p. 76). Consequently, the period outcomes of CBIs are observed contributes to understanding and confidence of what value means, or perhaps determines it, in the case of van Haeften‐Van Dijk et al However, all studies were short‐term limiting detail pertaining to the time–value–measure relationship.…”

“…measured "change in health over time to assert value", following participants over 12 months, illustrating the view that time is a mandatory criterion for suggesting causation of outcomes, and thus value (Thiese, 2014). Others further the point, implying the need to measure change longitudinally to properly observe outcomes (Faw et al, 2021), and exploration of value needs to be "sensitive…to detect change over time" (Ratcliffe et al, 2019, p. 76) Discussion here is limited to research time (frame) and equally important is the contribution of 'lived time'. This is particularly pertinent in the context of CBIs because people's lived and learned experience is an 'important' and 'active' enabling factor for being supported and managing the dementia pathway (Eriksen et al, 2020).…”

Conducting family meetings on families with dementia: An integrative review

“…The positive effects of family meetings on delaying nursing home placements are achieved simultaneously with the improvement of caregivers' well‐being. Previous studies have reported that family members who participate in family meetings exhibit greater tolerance for the memory and behaviour problems of individuals with dementia and report increased satisfaction with the support received (Faw et al., 2021; Mittelman et al., 2004). These outcomes align with our expectations.…”

Support and Empowerment for Older Adult Spousal Caregiving of People with Mild and Moderate Dementia: A Participatory Action Research

“…In addition, older adult caregivers may not receive information as easily as young caregivers; therefore, they tended to provide day-to-day patient care using their common sense [ 38 ]. Previous study has pointed out that when these caregivers gained more knowledge and understanding about dementia, they were more empathetic and closer to the patient, and their fear and negative emotions about symptoms were reduced, and they also had the knowledge and ability to care for patients, leading to a better quality of life [ 20 ]. A study on spousal caregivers pointed out that after implementing 6–12 months of cognitive-behavioral therapy and life review intervention, the caregivers were able to improve patient care efficacy [ 37 ].…”

“…Rather than only fulfilling the role of providing health services in the community, the lead researcher wanted to enable people with dementia to break new ground by contributing to the creation of knowledge. Similarly, spouses who support people with dementia have an important contribution to make [ 20 ]. The aim of this action research was conducted to develop a program for support and empowerment among older adult caregivers of spouses with mild and moderate dementia in the community.…”