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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. J Am Geriatr Soc 66:2120-2127, 2018.

SUBMITTER: Jennings LA

PROVIDER: S-EPMC7023482 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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

Jennings Lee A LA Ramirez Karina D KD Hays Ron D RD Wenger Neil S NS Reuben David B DB

Journal of the American Geriatrics Society 20181009 11

<h4>Objectives</h4>To develop a process of goal-setting and measurement of goal attainment in a dementia care management program.<h4>Design</h4>Observational.<h4>Setting</h4>Dementia care management program in an urban academic medical center.<h4>Participants</h4>Persons with dementia (N=101) and their caregivers; nurse practitioner dementia care managers (N=5).<h4>Intervention</h4>Specification of a personalized health goal and action plan and measurement of goal attainment using goal attainmen ...[more]

PMID: 30298901

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Project description:There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development.We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis.We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future.Incorporating caregiver and community stakeholders was critical to ensure that the priorities of our community are addressed in a culturally responsive accessible program for family caregivers. The forum served as important mechanism to partner with the community and will be an annual event where we can continue to work with our stakeholders around needs for practice, education, and research.

Project description:BackgroundThere are challenges in healthcare service delivery in rural areas, and this may be especially true for persons with dementia, who have higher needs to access to the healthcare system, and may have difficulties to commute easily and safely to these services. There is a growing body of literature regarding geographical disparities, but there is no comprehensive systematic review of geographical differences in persons with dementia across all domains of care quality. Therefore, the objective of this study is to conduct a systematic review of the literature on rural and urban differences in quality of dementia care outcomes of persons with dementia across all quality-of-care domains.MethodsWe performed a digital search in Ovid MEDLINE on July 16, 2019, updated on May 3, 2021, for French or English records. We selected studies that reported outcome from at least one domain of quality of dementia care (Access, Integration, Effective Care, Efficient Care, Population Health, Safety, and Patient-Centered) in both rural and urban persons with dementia or caregivers. We used rigorous, systematic methods for screening, selection, data extraction and we analyzed outcomes reported by at least two studies using vote counting and appraised the certainty of evidence. Finally, we explored sources of heterogeneity.ResultsFrom the 38 included studies, we found differences in many dementia care domains. Rural persons with dementia had higher mortality rates (Population Health), lower visits to any physicians (Access), more hospitalizations but shorter stays (Integration), higher antipsychotic medications (Safety), lower use of home care services and higher use of nursing home (Patient-Centered Care) compared to urban persons with dementia.ConclusionsThis comprehensive portrait of rural-urban differences in dementia care highlights possible geographically based inequities and can be used by researchers and decision makers to guide development of more equitable dementia care policies.

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

Publications

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

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