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

Abstract

OBJECTIVES: To develop a process of goal-setting and measurement of goal attainment in a dementia care management program. DESIGN: Observational. SETTING: Dementia care management program in an urban academic medical center. PARTICIPANTS: Persons with dementia (N=101) and their caregivers; nurse practitioner dementia care managers (N=5). INTERVENTION: Specification of a personalized health goal and action plan and measurement of goal attainment using goal attainment scaling in a clinical care visit. MEASUREMENTS: Goal attainment at 6 and 12 months; focus groups of 5 dementia care managers. RESULTS: Eighty-four percent of participant goals were nonmedical, 47% were related to quality of life, and 29% were caregiver support goals. Eighty-eight percent of participants felt that the goal they set was meaningful and 74% that the goal-setting process captured something different from usual care, and 85% found the process helpful in planning for future care. At 6 months, 74% of dyads had achieved or exceeded their expected level of goal attainment. Dementia care managers felt that the goal-setting process improved their understanding of what was most important to the patient, helped set expectations about disease progression and care needs, and provided positive reinforcement when goals were accomplished and an opportunity for revision when goals were not met. CONCLUSION: Goal setting using goal attainment scaling can be incorporated into the care of persons with dementia to establish and attain person-centered goals. Research is needed to further develop personalized goal attainment as an outcome measure for dementia care.

<p>Utilization, effect, and benefit of the individualized Meeting Centers Support Program for people with dementia and caregivers</p>

“…Further research in larger samples is recommended to investigate how conducting different types of volunteer work that match their talents influences the feelings of autonomy, self-esteem, and quality of life of people with dementia. Also, further development of methods of personalized goal attainment is necessary to better understand what is important to the person with dementia and their caregivers and to evaluate if goals are achieved, which is particularly important to guide this matching process and to evaluate the outcomes (see also Jennings et al) 51…”

2020 Alzheimer's disease facts and figures

“…Because caregivers and the settings in which they provide care are diverse, more studies are required to define which interventions are most effective for specific situations and how these interventions are successful 444‐447 . Improved tools and measures to personalize services for caregivers to maximize their benefits represent an emerging area of research 448‐454 . More studies are also needed to adapt proven interventions or develop new intervention approaches for families from different racial, ethnic and socioeconomic backgrounds and in different geographic settings 455‐469 .…”

“…[444][445][446][447] Improved tools and measures to personalize services for caregivers to maximize their benefits represent an emerging area of research. [448][449][450][451][452][453][454] More studies are also needed to adapt proven interventions or develop new intervention approaches for families from different racial, ethnic and socioeconomic backgrounds and in different geographic settings. [455][456][457][458][459][460][461][462][463][464][465][466][467][468][469] Additional research on interventions focused on disease stages is also needed, as well as research on specific intervention needs for LGBT caregivers.…”

A mixed-methods feasibility study of a goal-focused manualised intervention to support people with dementia to stay living independently at home with support from family carers: NIDUS (New Interventions for Independence in Dementia Study) Family

“…Outcomes that matter most to people living with dementia and their families vary greatly between individuals, and over time. Early on, they may prioritise preserving function; as the disease progresses, goals may shift to maintaining mobility, controlling neuropsychiatric symptoms and reducing caregiver strain (Jennings, Ramirez, Hays, Wenger, & Reuben, 2018). We used Goal Attainment Scaling (GAS) as our primary outcome, asking dyads to set goals that reflected what they considered most important in enabling them to live well and as independently as possible at home (Jennings et al, 2018).…”