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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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Publications

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:Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.

Dataset Information

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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