Co-Creating Community-Embedded Respite Opportunities for Care Partners of Persons Living with Dementia and Frailty

Background: Many people provide ongoing and intensive caregiving support to older adults living with complexity and/or frailty, including dementia. Burnout from caregiving contributes to poor health outcomes (for care partners and the recipients of care) and added pressure on health systems (i.e. Emergency Departments, Hospitals, Long-Term Care). One way to reduce caregiving burnout is to develop Community-Embedded Dyadic Respite (CDR) opportunities. CDR refers to social and recreational activities specifically designed for both the older adult and their care partner that are embedded in normalized, naturally occurring community programming (i.e. adaptive museum tours).

 

At this time, CDR options are largely absent in most communities. Properly designed CDR can provide respite from daily caregiving stress, support participants’ health and wellbeing, and create meaningful moments of engagement between care partners and their loved one. In addition to these health and social benefits, increasing CDR access can foster equitable participation and inclusion for this marginalized group, and help ease the burden on formal care-based respite and other health resources.

 

 

Approach:Drawing on an established regional hub-and-spoke infrastructure, our Specialized Geriatric Service (SGS) brought together local community organizations (i.e. heritage museums, art galleries, recreation centres, conservation areas), persons with lived experience, and health care agencies to co-design and co-implement a network of CDR opportunities in North Simcoe-Muskoka, Ontario, Canada. A pragmatic case-based evaluation was conducted to assess the impact of the co-design (network structure, partnership processes) and co-implementation of new CDR initiatives on participants (i.e., community organizations, older adults , care partners).

 

 

Results:We will highlight how the SGS program embarked on a capacity-building initiative, working with community partners to co-create, co-sustain and integrate CDR opportunities into local organizations across the region.

Based on study results, we will present:

- the network-wide capacity-building infrastructure (new structures)

- essential co-design and co-implementation processes (inclusive practices, wider collaboration)

- exemplar CDR initiatives that emerged (investing in diverse workforce capacity)

- early outcomes for care partners, older adults, partner organizations and practitioners (equitable access to respite opportunities without strict eligibility criteria and financial expense)

We will discuss study results, highlight practical steps for planning and implementation, and explore lesson learned.

 

Implications:Healthcare services often don’t have the time or tools to support the needs of care partners. Community programs cater to the mainstream population, with very few having the resources, skills and vision to explore CDR opportunities. This means that care partners’ needs can be overlooked in both care and community domains, making them an underserved group. CDR initiatives, co-designed by persons with lived experience, health care agencies and community organizations, can help dismantle intersectional barriers and improve equitable access to appropriately tailored community-based respite supports.

 

CDRs offer the opportunity to expand support systems beyond healthcare walls tapping into open and responsive community organizations and human resources. CDRs hold promise for improving health outcomes, efficient use of health resources, and extending aging-in-place for older adults.

Our presentation will offer insights for practitioners, administrators and decision-makers interested in spearheading care-community alliances to build CDR networks in their communities.