Caregivers’ Perceptions of Family Quality of Life of Individuals with Developmental Disabilities Comorbid with Dementia: A Pilot Study

Abstract

Introduction: Although individuals with intellectual/ developmental disabilities (I/DD) are living longer than in the past, they also are exposed to age-related changes in health and well-being. They are prone to acquire dementia that often manifests earlier and more frequently than in the general population. However, there is sparse knowledge on the daily challenges that affect the quality of life of the individuals with I/DD and comorbid dementia and their family caregivers. Aim: This pilot study examined strengths and challenges of individuals with dual diagnoses of I/DD and dementia using the family quality of life (FQOL) framework. Method: Cross-sectional data was gathered from a convenience sample of family caregivers using a web-based electronic survey. Results:The variables of interest in this study were the levels of importance and satisfaction attributed to the nine FQOL domains, and overall FQOL. The mean level of importance was higher than the associated ratings of satisfaction in eight of the nine domains, with an overall importance mean of 4.15 and satisfaction mean of 3.28. Analysis of the open-ended comments indicated that the negative impact of social isolation, compound caregiving, and dynamically changing caregiving needs on overall FQOL was balanced by participants' values and beliefs. Implications for Practice: The discrepancies in the FQOL domains pertaining to formal and informal services and social supports elucidate a need to empower families with high caregiving needs through research, practice and policy. Conclusions: Providers should be cognizant of the needs of individuals with I/DD and dementia comorbid, as well as the needs of their family caregivers.

The experiences of caring for someone with dementia and a learning disability: A qualitative systematic review

“…Thirteen of the studies used qualitative methodology, considered to meet the study objective. Marsack-Topolewsk and Samuel (2020) utilised mixed methodology appropriately to address their research aims. Eight of the studies used mixed populations comprising of varying participant combinations including care recipients, family carers, formal carers, and health care professionals ( Carling-Jenkins et al, 2012 ; Furniss et al, 2012 ; Herron et al, 2020 ; Kerr & Wilkinson, 2006 ; Ryan et al, 2018 ; Sheth, 2019 ; Watchman, 2005 ; Wilkinson et al, 2005 ).…”

“…Formal carers had greater availability and implementation of self-care strategies compared to family carers such as supervision, physically and emotionally distancing themselves, setting realistic expectations and goals ( Perera & Standen, 2014 ), working shorter and flexible shifts ( Wilkinson et al, 2005 ), and peer support to normalise and validate thoughts and emotions ( Herron et al, 2020 ; Perera & Standen, 2014 ; Ryan et al, 2018 ). Family carers utilised their faith for support and hope to navigate the challenges within their caring role ( Marsack-Topolewsk & Samuel, 2020 ; Perera & Standen, 2014 ).…”

“…Ten papers referenced overshadowing and overlapping of conditions ( Carling-Jenkins et al, 2012 ; Coyle et al, 2014 ; Furniss et al, 2012 ; Herron et al, 2020 ; Iacono et al, 2014 ; Kerr & Wilkinson, 2006 ; Marsack-Topolewsk & Samuel, 2020 ; Marsack-Topolewski & Brady, 2020 ; Ryan et al, 2018 ; Wilkinson et al, 2005 ). Care recipient’s behaviours pose a significant challenge for both family and formal carers in relation to whether they are attributable to learning disability, personality, dementia, physical or mental health condition.…”

“…Developing dementia in addition to a learning disability has a compounding impact on the individual, their family and various other support systems ( Llewellyn, 2011 ). Implications include the impact on quality of life, psychological and physical health, and financial and relationship stressors ( Marsack-Topolewsk & Samuel, 2020 ; McLaughlin & Jones, 2011 ). The education and training that dual diagnosis carers receive to recognise the development and support the functional changes and progression of the dementia, through to end of life is reportedly lacking ( Courtenay et al, 2010 ; Herron et al, 2020 ; McCarron et al, 2010 ).…”

When More Is Too Much: Compound Caregiving, Barriers to Services, and Service Support for Older Families of People With Disabilities

“…The chasm of services in supporting adults with I/DD after they exit the educational system also contributes to the distress experienced by compound caregivers (Marsack-Topolewski, 2020b). Past FQOL research has underscored the need for service systems to adapt to older families’ needs (Jokinen, 2006; Marsack-Topolewski & Samuel, 2020). The complicated trajectories of compound caregivers that evolve in response to families’ dynamically changing needs warrants further exploration (Grossman & Webb, 2016).…”