Well-being in dementia: a cross-sectional dyadic study of the impact of multiple dimensions of strain on persons living with dementia and their family care partners

Abstract

Background and Purpose: The impact of dementia-related stressors and strains have been examined for their potential to threaten the well-being of either the person with dementia or the family care partner, but rarely have studies considered the dyadic nature of well-being in dementia. The purpose of this study was to examine the dyadic effects of multiple dimensions of strain on the well-being of dementia care dyads. Methods: Using multilevel modeling to account for the inter-relatedness of individual well-being within dementia care dyads, we examined cross-sectional responses collected from 42 dyads comprised of a hospitalized patient diagnosed with a primary progressive dementia (PWD) and their family care partner (CP). Both PWDs and CPs self-reported on their own well-being using measures of quality of life (QOL-Alzheimer’s Disease scale) and depressive symptoms (Center for Epidemiological Studies Depression Scale). Results: In adjusted models, the PWD’s well-being (higher QOL and lower depressive symptoms) was associated with significantly less strain in the dyad’s relationship. The CP’s well-being was associated with significantly less care-related strain, and (for QOL scale) less relationship strain. Conclusions: Understanding the impact of dementia on the well-being of PWDs or CPs may require an assessment of both members of the dementia care dyad in order to gain a complete picture of how dementia-related stressors and strains impact individual well-being. These results underscore the need to assess and manage dementia-related strain as a multi-dimensional construct that may include strain related to the progression of the disease, strain from providing care, and strain on the dyad’s relationship quality.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

“…Care partners recognized their role in comanaging their own emotions and responses and those of their relative. The significance of the care partner further expounds upon the need for health care providers to address the multidimensional needs of the dyad (Miller et al, 2019). Dyadic care planning programs that connect people with early stage ADRD, their care partners, other relatives/ friends, and service providers show promise for initiating early care discussions and promoting family-centered care planning (Orsulic-Jeras et al, 2019).…”

Preliminary Efficacy of Let’s Talk Tech: Technology Use Planning for Dementia Care Dyads

“…Communication decline and losses in autonomy are already significant stressors for people with a diagnosis of AD/ADRD ( Shelton et al, 2018 ). This stress may be compounded if they do not have a voice in decisions about how they are monitored and contribute to strain in relationships with care partners, which can negatively affect both parties’ quality of life ( Miller et al, 2019 ; Bonds, Whitlatch, et al, 2021 ). The burden of decision making about care without knowing that person’s preferences is also a source of stress for care partners ( Horowitz et al, 2004 ; Whitlatch et al, 2009 ).…”

Well-being in dementia and mild cognitive impairment

“…It is worth noting that these four papers are products of research efforts from several different countries: the USA (Miller et al, 2019), the UK (Bosco et al, 2019), Belgium (Dewitte et al, 2019), Chile and Portugal (Farhang et al, 2019). This demonstrates that well-being in dementia is a component of the global zeitgeist of dementia care.…”

“…Miller and colleagues (Miller et al, 2019) studied 42 dyads comprised of a hospitalized patient with dementia and a family caregiver (a majority of these caregivers were adult daughters). Well-being was assessed for both individuals with dementia and caregivers with Quality of Life-Alzheimer's Disease Scale (QOL-AD) and Center for Epidemiologic Studies-Depression Scale (CES-D).…”