Assessing Determinants of Perceived Quality in Transitions for People with Dementia: a Prospective Observational Study

Abstract

BackgroundThe trajectory of dementia through time is characterized by common transitions which are difficult for persons with dementia (PWDs) and their families and friends. Our study sought to identify determinants for the quality of transition outcomes.MethodA 24-month, prospective, longitudinal design identified specific transitions as they occurred in 108 person-with-dementia/caregiver dyads, and assessed the perceived transition quality from the perspective of the caregiver and what we denote as the ‘summative’ transition quality outcome variable (as explained in the Data Processing section under Methods).ResultsAmong caregivers and during the authors’ deliberations of the summative transition quality outcomes, good transition quality was associated with the PWD’s baseline Disability Assessment for Dementia (OR 1.04, 95% CI 1.02-1.06 per increase in percent score based on summative assessments), and with the PWD’s higher baseline quality of life scores (OR 1.11, 95% CI 1.05-1.18 per increase in unit of score in QOL-AD based on summative assessments). Caregiver-perceived better outcome quality was associated with lower caregiver burden, (OR 0.97, 95% CI 0.95-0.99 per unit CBI score increase).ConclusionIdentifying determinants of successful transitions is feasible and may be translated into practical guidance for use in clinical encounters. Those with worse prior quality of life or worse performance in activities of daily living appear to require specific support during transitions, as do those whose caregivers report higher levels of burden.

Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

“…Most people with dementia live at home and are cared for primarily by their spouse or adult children, the informal caregivers [ 2 ]. Caring for people with dementia is perceived as one of the most stressful experiences, as family caregivers may face long-term problems of managing activities of daily living [ 3 , 4 ], behavioral and psychological symptoms [ 5 , 6 ], and organizing care and providing emotional support [ 7 , 8 ]. However, due to a lack of supportive resources and knowledge of dementia, family caregivers have low confidence in managing caregiving [ 9 ] and do not know what to do when their relatives have dementia-related behavioral problems, need emotional support, and require the coordination of dementia care [ 10 ].…”

Effect of Expressed Emotion Instructional Guidelines on Family Caregiver's Burdens of Patients with Alzheimer

“…They teach family carers how to offer expert care so that their loved ones can live longer in their homes and avoid costly long-term care facilities, as well as how to maintain their health and well-being. Additionally, community health nurses are assuming larger roles in care coordination, care transitions, and health and wellness education and promotion, all of which support family carers and lead to an improvement in the care and quality of life for Alzheimer's patients (Drummond et al, 2019).…”

“…In this situation, family caregivers-referred to as "caregivers"-have a larger responsibility to play (Drummond et al, 2019). Carers can develop social networks, find emotional support, and receive knowledge by receiving educational and social support treatments (Khalil et al, 2020).…”