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.
Project description:Background:In keeping with the changing needs of the Canadian population, primary care systems need to become more person-focused in providing quality care to older adults. As part of Health TAPESTRY, a complex intervention to strengthen primary care for older adults, a goal setting exercise was developed and tested in an initial feasibility study, intended to foster collaboration between patients and providers. Methods:Participants-clinic clients-were recruited from the McMaster Family Health Team in Hamilton, Ontario. Five participants took part in the goal setting feasibility study phase I, which tested the functionality of a technology-enabled goal setting exercise between older adults and volunteers. Based on observations and feedback from volunteers, interprofessional team members, and older adults, the exercise was refined to include a guided survey and goals report. The goal setting survey is a list of probing questions designed based on SMART (specific, measurable, attainable, relevant, timely) goal setting strategies and goal attainment scaling (GAS). This was used in phase II, carried out with 16 participants, where the feasibility of goal setting and goal attainment with support from volunteers and interprofessional teams was tested. Volunteers carried out the goal setting survey via a tablet computer, a report of client goals was generated and sent to interprofessional teams, and client goals were discussed during clinic huddles. At 6?months of follow-up, clients self-evaluated their progress using GAS. Results and discussion:The goal setting exercise in phase I took an average of 24:45 (SD 11:42) minutes and yielded a diverse set of life and health goals. Goals identified by older adults were primarily focused on the maintenance of a certain level of activity or health state. Phase I work resulted in important changes to the goal setting process (e.g., asking about goal setting later in conversation, changing wording of questions) and development of a summary report of goals sent to the interprofessional team. In phase II, 44 goals were set by 16 participants during an average 7:23 (SD 4:26) minute discussion. Of these goals, 43.9% were characterized as health goals while 63.4% were characterized as life goals. Under the umbrella of Life goals, productivity featured most prominently at 22.9% of all goals. Goal attainment was not measured in phase I. In phase II, clients had an average weighted goal attainment score of 51.5. Considering client preferences for one goal over another, 68.8% of clients, on average, at least partially achieved the goals they had set. Conclusion:Goal setting as part of the Health TAPESTRY approach was feasible and provided interprofessional teams with client narratives that helped improve care management for older adults. The overall intervention-including the refined goal setting component-is being scaled and evaluated in a pragmatic randomized controlled trial.
Project description:BACKGROUND:Nursing home (NH) residents with dementia experience high rates of intensive treatment near the end of life. Limited research examines whether treatment is concordant with goals of care (GOC). OBJECTIVES:We analyzed data from the GOC trial to describe family decision makers' preferred GOC and perceptions of goal-concordant care for NH residents with late-stage dementia We compared subsequent treatment orders when families chose a primary goal of comfort versus other goals. DESIGN:We performed a secondary analysis of data from baseline and 9-month family decision-maker interviews and chart reviews. SETTING AND PARTICIPANTS:A total of 302 dyads of NH residents and family decision makers in 22 North Carolina NHs were enrolled. MEASUREMENTS:In baseline and follow-up interviews, families reported on their and NH staff's primary GOC, and perceived prognosis and goal-concordant care. Chart reviews provided data on treatment orders, hospital transfers, and hospice, which were compared after selection of a primary goal of comfort versus other goals. RESULTS:Family chose comfort as the primary goal for 66% of residents at baseline, and for nearly 80% by 9 months or death. At baseline, 49% perceived concordance with NH staff on the primary goal, and 69% at follow-up. In multivariate models, choice of comfort as the primary goal, versus other goals, was associated with half as many hospital transfers (0.11 vs. 0.25/90 person-days, confidence interval [-0.2 to -0.01]), but not with hospice or treatment orders. CONCLUSIONS:Most families chose comfort as the primary GOC. Further research is needed to translate this preference into comfort-focused treatment plans for late-stage dementia. Clinicaltrials.gov : NCT01565642 (3/26/12).
Project description:To describe functional goals and factors associated with goal attainment among low-income older adults with disabilities living in the community.Secondary analysis.Participants' homes.Older adults (N=226) with disability who participated in the Community Aging in Place, Advancing Better Living for Elders trial.A 5-month, home-based, person-directed, structured program delivered by an interprofessional team: occupational therapist, registered nurse, and handyman.Process of occupational therapist goal setting and attainment at the final occupational therapist visit.Participants identified 728 functional goals (mean of 3.2 goals per participant), most commonly related to transferring (22.0%; n=160 goals), changing or maintaining body position (21.4%; n=156 goals), and stair climbing (13.0%; n=95 goals). Participants attained 73.5% (n=535) of goals. Goal attainment was highest for stair climbing (86.3%), transferring (85.6%), and self-care (84.6%); walking goals were less likely attained (54.0%). Goal attainment was not associated with age, sex, education, depressive symptoms, function, or health-related quality of life but was less likely among participants who had severe pain compared with those without pain (adjusted odds ratio, 0.38; 95% confidence interval, 0.17-0.86). When participant readiness to change score increases by 1 point on the 4-point scale, goal attainment was 62% more likely (adjusted odds ratio, 1.62; 95% confidence interval, 1.14-2.29).Home-based collaborative goal setting between older adults and occupational therapists is feasible and particularly effective when individuals are ready or willing to adopt new strategies to achieve identified goals.
Project description:OBJECTIVES:To determine whether individual goal-oriented cognitive rehabilitation (CR) improves everyday functioning for people with mild-to-moderate dementia. DESIGN AND METHODS:Parallel group multicentre single-blind randomised controlled trial (RCT) comparing CR added to usual treatment (CR) with usual treatment alone (TAU) for people with an ICD-10 diagnosis of Alzheimer, vascular or mixed dementia, and mild-to-moderate cognitive impairment (Mini-Mental State Examination [MMSE] score ? 18), and with a family member willing to contribute. Participants allocated to CR received 10 weekly sessions over 3 months and four maintenance sessions over 6 months. Participants were followed up 3 and 9 months post randomisation by blinded researchers. The primary outcome was self-reported goal attainment at 3 months. Secondary outcomes at 3 and 9 months included informant-reported goal attainment, quality of life, mood, self-efficacy, and cognition and study partner stress and quality of life. RESULTS:We randomised (1:1) 475 people with dementia; 445 (CR = 281) were included in the intention to treat analysis at 3 months and 426 (CR = 208) at 9 months. At 3 months, there were statistically significant large positive effects for participant-rated goal attainment (d = 0.97; 95% CI, 0.75-1.19), corroborated by informant ratings (d = 1.11; 95% CI, 0.89-1.34). These effects were maintained at 9 months for both participant (d = 0.94; 95% CI, 0.71-1.17) and informant (d = 0.96; 95% CI, 0.73-1.2) ratings. The observed gains related to goals directly targeted in the therapy. There were no significant differences in secondary outcomes. CONCLUSIONS:CR enables people with early-stage dementia to improve their everyday functioning in relation to individual goals targeted in the therapy.
Project description:ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia.A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes.Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers.ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.
Project description:BACKGROUND/AIMS:Ensuring fidelity to a behavioral intervention implemented in nursing homes requires awareness of the unique considerations of this setting for research. The purpose of this article is to describe the goals of care cluster-randomized trial and the methods used to monitor and promote fidelity to a goals of care decision aid intervention delivered in nursing homes. METHODS:The cluster randomized trial tested whether a decision aid for goals of care in advanced dementia could improve (1) the quality of communication and decision-making, (2) the quality of palliative care, and (3) the quality of dying for nursing home residents with advanced dementia. In 11 intervention nursing homes, family decision-makers for residents with advanced dementia received a two-component intervention: viewing a video decision aid about goals of care choices and then participating in a structured decision-making discussion with the nursing home care plan team, ideally within 3?months after the decision aid was viewed. Following guidelines from the National Institutes of Health Behavior Change Consortium, fidelity was assessed in study design, in nursing home staff training for intervention implementation, and in monitoring and receipt of the intervention. We also monitored the content and timing of goals of care discussions. RESULTS:Investigators enrolled 151 family decision-maker/resident dyads in intervention sites; of those, 136 (90%) received both components of the intervention, and 92%-99% of discussions addressed each of four recommended content areas-health status, goals of care, choice of a goal, and treatment planning. A total of 94 (69%) of the discussions between family decision-makers and the nursing home care team were completed within 3?months. CONCLUSION:The methods we used for intervention fidelity allowed nursing home staff to implement a goals of care decision aid intervention for advanced dementia. Key supports for implementation included design features that aligned with nursing home practice, efficient staff training, and a structured guide for goals of care discussions between family decision-makers and staff. These approaches may be used to promote fidelity to behavioral interventions in future clinical trials.
Project description:Importance:In advanced dementia, goals of care decisions are challenging and medical care is often more intensive than desired. Objective:To test a goals of care (GOC) decision aid intervention to improve quality of communication and palliative care for nursing home residents with advanced dementia. Design, Setting, and Participants:A single-blind cluster randomized clinical trial, including 302 residents with advanced dementia and their family decision makers in 22 nursing homes. Interventions:A GOC video decision aid plus a structured discussion with nursing home health care providers; attention control with an informational video and usual care planning. Main Outcomes and Measures:Primary outcomes at 3 months were quality of communication (QOC, questionnaire scored 0-10 with higher ratings indicating better quality), family report of concordance with clinicians on the primary goal of care (endorsing same goal as the "best goal to guide care and medical treatment," and clinicians' "top priority for care and medical treatment"), and treatment consistent with preferences (Advance Care Planning Problem score). Secondary outcomes at 9 months were family ratings of symptom management and care, palliative care domains in care plans, Medical Orders for Scope of Treatment (MOST) completion, and hospital transfers. Resident-family dyads were the primary unit of analysis, and all analyses used intention-to-treat assignment. Results:Residents' mean age was 86.5 years, 39 (12.9%) were African American, and 246 (81.5%) were women. With the GOC intervention, family decision makers reported better quality of communication (QOC, 6.0 vs 5.6; P?=?.05) and better end-of-life communication (QOC end-of-life subscale, 3.7 vs 3.0; P?=?.02). Goal concordance did not differ at 3 months, but family decision makers with the intervention reported greater concordance by 9 months or death (133 [88.4%] vs 108 [71.2%], P?=?.001). Family ratings of treatment consistent with preferences, symptom management, and quality of care did not differ. Residents in the intervention group had more palliative care content in treatment plans (5.6 vs 4.7, P?=?.02), MOST order sets (35% vs 16%, P?=?.05), and half as many hospital transfers (0.078 vs 0.163 per 90 person-days; RR, 0.47; 95% CI, 0.26-0.88). Survival at 9 months was unaffected (adjusted hazard ratio [aHR], 0.76; 95% CI, 0.54-1.08; P?=?.13). Conclusions and Relevance:The GOC decision aid intervention is effective to improve end-of-life communication for nursing home residents with advanced dementia and enhance palliative care plans while reducing hospital transfers. Trial Registration:clinicaltrials.gov Identifier: NCT01565642.
Project description:Advance care planning (ACP) facilitates communication and understanding of preferences, nevertheless the use of ACPs in primary care is low. The uncertain course of dementia and the inability to communicate with the patient living with dementia are significant challenges for GPs to initiate discussions on goals of care.A cross-sectional survey, using a purposive, cluster sample of GPs across Northern Ireland with registered dementia patients was used. GPs at selected practices received the survey instrument and up to four mail contacts was implemented.One hundred and thirty-three GPs (40.6%) participated in the survey, representing 60.9% of surveyed practices. While most respondents regarded dementia as a terminal disease (96.2%) only 37.6% felt that palliative care applied equally from the time of diagnosis to severe dementia. While most respondents thought that early discussions would facilitate decision-making during advanced dementia (61%), respondents were divided on whether ACP should be initiated at the time of diagnoses. While most respondents felt that GPs should take the initiative to introduce and encourage ACP, most survey participants acknowledged the need for improved knowledge to involve families in caring for patients with dementia at the end of life and that a standard format for ACP documentation was needed.Optimal timing of ACP discussions should be determined by the readiness of the patient and family carer to face end of life. ACP discussions can be enhanced by educational strategies directed towards the patient and family carer that enable shared decision-making with their GP when considering options in future care.
Project description:Person-Centered Integrated Care (PC-IC) is believed to improve outcomes and experience for persons with multiple long-term and complex conditions. No broad consensus exists regarding how to capture the patient-experienced quality of PC-IC. Most PC-IC evaluation tools focus on care events or care in general. Building on others' and our previous work, we outlined a 4-stage goal-oriented PC-IC process ideal: 1) Personalized goal setting 2) Care planning aligned with goals 3) Care delivery according to plan, and 4) Evaluation of goal attainment. We aimed to explore, apply, refine and operationalize this quality of care framework.This paper is a qualitative evaluative review of the individual Patient Pathways (iPP) experiences of 19 strategically chosen persons with multimorbidity in light of ideals for chronic care. The iPP includes all care events, addressing the persons collected health issues, organized by time. We constructed iPPs based on the electronic health record (from general practice, nursing services, and hospital) with patient follow-up interviews. The application of the framework and its refinement were parallel processes. Both were based on analysis of salient themes in the empirical material in light of the PC-IC process ideal and progressively more informed applications of themes and questions.The informants consistently reviewed care quality by how care supported/ threatened their long-term goals. Personal goals were either implicit or identified by "What matters to you?" Informants expected care to address their long-term goals and placed responsibility for care quality and delivery at the system level. The PC-IC process framework exposed system failure in identifying long-term goals, provision of shared long-term multimorbidity care plans, monitoring of care delivery and goal evaluation. The PC-IC framework includes descriptions of ideal care, key questions and literature references for each stage of the PC-IC process. This first version of a PC-IC process framework needs further validation in other settings.Gaps in care that are invisible with event-based quality of care frameworks become apparent when evaluated by a long-term goal-driven PC-IC process framework. The framework appears meaningful to persons with multimorbidity.
Project description:Goal setting is considered 'best practice' in stroke rehabilitation; however, there is no consensus regarding the key components of goal setting interventions or how they should be optimally delivered in practice. We developed a theory-based goal setting and action planning framework (G-AP) to guide goal setting practice. G-AP has 4 stages: goal negotiation, goal setting, action planning & coping planning and appraisal & feedback. All stages are recorded in a patient-held record. In this study we examined the implementation, acceptability and perceived benefits of G-AP in one community rehabilitation team with people recovering from stroke.G-AP was implemented for 6 months with 23 stroke patients. In-depth interviews with 8 patients and 8 health professionals were analysed thematically to investigate views of its implementation, acceptability and perceived benefits. Case notes of interviewed patients were analysed descriptively to assess the fidelity of G-AP implementation.G-AP was mostly implemented according to protocol with deviations noted at the planning and appraisal and feedback stages. Each stage was felt to make a useful contribution to the overall process; however, in practice, goal negotiation and goal setting merged into one stage and the appraisal and feedback stage included an explicit decision making component. Only two issues were raised regarding G-APs acceptability: (i) health professionals were concerned about the impact of goal non-attainment on patient's well-being (patients did not share their concerns), and (ii) some patients and health professionals found the patient-held record unhelpful. G-AP was felt to have a positive impact on patient goal attainment and professional goal setting practice. Collaborative partnerships between health professionals and patients were apparent throughout the process.G-AP has been perceived as both beneficial and broadly acceptable in one community rehabilitation team; however, implementation of novel aspects of the framework was inconsistent. The regulatory function of goal non-attainment and the importance of creating flexible partnerships with patients have been highlighted. Further development of the G-AP framework, training package and patient held record is required to address the specific issues highlighted by this process evaluation. Further evaluation of G-AP is required across diverse community rehabilitation settings.