Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019.

BACKGROUND: Dementia palliative care is increasingly subject of research and practice improvement initiatives. AIM: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. DESIGN: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019. SETTING/PARTICIPANTS: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. RESULTS: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased. CONCLUSION: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.

Effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: A cluster-randomized controlled three-armed trial.

BACKGROUND: Despite increased attention for palliative care in dementia, recent studies found burdensome symptoms and unmet family caregiver needs in the last phase of life. Feedback is being used to improve the quality of palliative care, but we do not know how effective it is. AIM: To assess the effect of two feedback strategies on perceived quality of end-of-life care and comfort in dying nursing home residents with dementia. METHODS: In a cluster-randomized controlled trial, the End-of-Life in Dementia-Satisfaction With Care and the End-of-Life in Dementia-Comfort Assessment in Dying scales were completed by bereaved family caregivers of residents with dementia of 18 Dutch nursing homes. Two feedback strategies, generic feedback with mean End-of-Life in Dementia-scores and feedback with individual (patient-specific) End-of-Life in Dementia-scores, were compared to no feedback provided. The intervention groups discussed End-of-Life in Dementia-ratings in team meetings and formulated actions to improve care. Multi-level analyses assessed effects. RESULTS: A total of 668 families rated the End-of-Life in Dementia-instruments. Compared to no feedback, the generic strategy resulted in lower quality of end-of-life care in unadjusted ( B = -1.65, confidence interval = -3.27; -0.21) and adjusted analyses ( B = -2.41, confidence interval = -4.07; -0.76), while there was no effect on comfort. The patient-specific strategy did not affect the quality of end-of-life care, but it increased comfort in unadjusted analyses (only, B = 2.20, confidence interval = 0.15; 4.39; adjusted: B = 1.88, confidence interval = -0.34; 4.10). CONCLUSION: Neither feedback strategy improved end-of-life outcome. Perhaps, skills to translate the feedback into care improvement actions were insufficient. Feedback with favorable family ratings might even have triggered opposite effects. Trial number: NTR3942.

Feedback on end-of-life care in dementia: the study protocol of the FOLlow-up project.

BACKGROUND: End-of-life care in dementia in nursing homes is often found to be suboptimal. The Feedback on End-of-Life care in dementia (FOLlow-up) project tests the effectiveness of audit- and feedback to improve the quality of end-of-life care in dementia. METHODS/DESIGN: Nursing homes systematically invite the family after death of a resident with dementia to provide feedback using the End-of-Life in Dementia (EOLD) - instruments. Two audit- and feedback strategies are designed and tested in a three-armed Randomized Controlled Trial (RCT): a generic feedback strategy using cumulative EOLD-scores of a group of patients and a patient specific feedback strategy using EOLD-scores on a patient level. A total of 18 nursing homes, three groups of six homes matched on size, geographic location, religious affiliation and availability of a palliative care unit were randomly assigned to an intervention group or the control group. The effect on quality of care and quality of dying and the barriers and facilitators of audit- and feedback in the nursing home setting are evaluated using mixed-method analyses. DISCUSSION: The FOLlow-up project is the first study to assess and compare the effect of two audit- and feedback strategies to improve quality of care and quality of dying in dementia. The results contribute to the development of practice guidelines for nursing homes to monitor and improve care outcomes in the realm of end-of-life care in dementia. TRIAL REGISTRATION: The Netherlands National Trial Register (NTR). TRIAL NUMBER: NTR3942.

Practice of Supporting Family Caregivers of Patients with Life-Threatening Diseases: A Two-phase Study Among Healthcare Professionals.

Background: Although support for family caregivers is an essential component of palliative care, routine provision of such support is often lacking. To improve support for family caregivers, we assessed current practice and influencing factors as perceived by healthcare professionals. Methods: A two-phase study was conducted including a survey exploring healthcare professionals' practice of supporting family caregivers in Western urbanized Netherlands in 2017, and focus groups exploring facilitators and barriers to supporting family caregivers in 2018. Focus group data were thematically analyzed with deductive coding based on the COM-B system. Results: Of the 379 survey respondents (response 11%), 374 were eligible (physicians, 28%; nurses, 64%; nurse assistants, 9%). The respondents practiced in academic hospitals (52%), general hospitals (31%), nursing homes (11%) and hospices (5%). They reported to always (38%), most of the time (37%), sometimes (21%) or never (5%) provide support to family caregivers during the illness trajectory. Respondents reported to always (28%), sometimes (39%), or never (33%) provide support after death. Four focus group discussions with 22 healthcare professionals elicited motivational facilitators and barriers to supporting family caregivers (e.g., relationship with family caregivers, deriving satisfaction from supporting them), and factors related to capability (e.g., (lacking) conversational skills, knowledge) and opportunity (e.g., (un)availability of protocols and time). Conclusions: Support for family caregivers, especially after the patient's death, is not systematically integrated in working procedures of healthcare professionals. The barriers and facilitators identified in this study can inform the development of an intervention aiming to enhance support for family caregivers.

How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers' Outcomes?

BACKGROUND: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving. OBJECTIVE: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes. DESIGN: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses. MEASUREMENTS: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care. RESULTS: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model. CONCLUSIONS: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.

Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia.

AIM: In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden. METHODS: A cross-sectional study was carried out using structured questionnaires administered through the telephone. Generalized estimating equation analyses with adjustment for nursing home clustering were applied to assess the most important associations with family caregivers' trust. RESULTS: A total of 214 family caregivers of persons with dementia residing in 25 nursing homes participated in the study. The majority of the participants (67%) were women and adult children (75%). The majority of the family caregivers trusted physicians, nurses and nurses' aides at a moderate-to-high level. Approximately half to one-third reported moderate-to-low levels of trust. Higher levels of trust were associated with more positive care outcomes, such as higher family satisfaction with care and more positive evaluations of physician-family communication. CONCLUSIONS: The present study showed the importance of family caregivers trusting nursing home health professionals for their experiences as caregivers. Although causation cannot be established, increased family caregivers' trust in nursing home health professionals by improving communication and exchange of information might provide a good basis for providing optimal palliative care in advanced dementia. Geriatr Gerontol Int 2017; 17: 2466-2471.