Patient and caregiver goals for dementia care

Abstract

Purpose Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers. Methods We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care. Results Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia. Conclusions Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.

What do family caregivers of people with dementia need? A mixed‐method systematic review

“…Therefore, it is crucial for family caregivers to receive timely and tailored information, especially in the early stages of dementia and during the whole disease trajectory. They also need to be guided in finding, learning and applying new knowledge and skills, such as accessing help to guarantee their beloved safety, dignity and functional independence as long as possible or regarding practical assistance for financial and legal concerns (Jennings et al., 2017).…”

Personalized Goal Attainment in Dementia Care: Measuring What Persons with Dementia and Their Caregivers Want

“…We administered a 41‐item goal inventory to 32 dyads to assess feasibility of use and refine the inventory. In 6 dyads, the person with dementia had early‐stage disease (MMSE score ≥ 23).…”

Barriers to Patient-Centered Care for Dementia Clients in the Long-Term Living Setting

“…In regards to medical care, participants yearned to receive high quality dementia care while limiting burdensome care near the end of life. Moreover, early-stage dementia individuals emphasized the significance of sustaining physical functioning and engaging in meaningful activity (Jennings et al, 2017).…”

“…Furthermore, caretakers expressed growing concerns over fraud and financial abuse. Accessing services and support over legal affairs and managing stress due to responsibilities poses as other issues when caring for individuals with dementia (Jennings et al, 2017). Minimizing conflict and controlling external factors, ameliorates the cognitive decline that infiltrates all aspects of health.…”