Spousal caregivers and persons with dementia: Increasing participation in shared leisure activities among hospital-based dementia support program participants

Abstract

Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses' participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers' needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions.

Sharing the Journey: Exploring a Social Leisure Program for Persons with Dementia and Their Spouses

“…This is disconcerting, considering that barriers to accessing leisure often intensify feelings of exclusion that are already commonly experienced by people who face marginalization (Reid, Frisby, & Ponic, 2002). Much of the exclusion people with dementia experience when it comes to leisure is often related to their discomfort in social settings with others who do not have a dementia diagnosis (Di Lauro, Pereira, Carr, Chiu, & Wesson, 2015;Vikstrom, Josephsson, Stigsdotter-Neely, & Nygard, 2008). Di Lauro and colleagues noted that persons living with dementia are apt to withdraw from social activities when they find social situations too cognitively demanding.…”

“…For example, Roland and Chappell (2015) reported that spouses often associate negative meanings to leisure activities because these activities produce social anxiety related to feelings of embarrassment. Moreover, recent research has highlighted the difficulty spouses of persons living with dementia experience when it comes to finding leisure pursuits that can be enjoyed as a couple (Di Lauro et al, 2015). Difficulties were related to a reduction in activities that involve cognitive engagement or social interaction.…”

The Effectiveness of a Dyadic Pain Management Program for Community-Dwelling Older Adults with Chronic Pain: A Pilot Randomized Controlled Trial

“…Caregiver education is especially important in caring for the elderly [30]. Interventions targeting informal caregivers can improve their knowledge and coping skills, with the result that they are able to take better care of the elderly and experience their caring role more positively [31]. Each older adult and informal caregiver make up a one-to-one group, in which the informal caregiver is considered the supervisor, guardian, partner, assessor, commentator, and prompter of the older adult.…”

“…Providing caregivers with education can be a good opportunity for informal caregivers to communicate with others who may have similar caregiving burdens and problems. Feedback from informal caregivers has shown that a dyadic intervention can be a good opportunity for the caregivers to explore activities in which they share an interest with their patient [31]. The Theory of Dyadic Illness Management moves beyond a discussion of the ways in which the individual patient and care partner respond to illness and focuses extensively on the dyad as an interdependent team [31].…”

“…Feedback from informal caregivers has shown that a dyadic intervention can be a good opportunity for the caregivers to explore activities in which they share an interest with their patient [31]. The Theory of Dyadic Illness Management moves beyond a discussion of the ways in which the individual patient and care partner respond to illness and focuses extensively on the dyad as an interdependent team [31]. In a trial based on that framework, older adults and their informal caregivers exercised in tandem and were required to interact physically and verbally as a team during the exercises, with the ultimate goal of improving the physical and mental health of both members of the dyad [32,33].…”