The process of family-centered counseling for caregivers of persons with dementia: barriers, facilitators and benefits.

BACKGROUND: Despite the high consistency of evidence in favor of person-centered care, little information is available on how person-centered and family-centered interventions are actually provided. The aim of this study is to gain insight into the provision of the effective New York University Caregiver Intervention (NYUCI) in order to enhance its implementation. METHODS: This is a qualitative study using a grounded theory approach. Group interviews were carried out with three purposefully sampled counselors who had provided the NYUCI. RESULTS: Six themes were identified: (1) family problems, (2) ways to deal with these family problems, (3) barriers encountered by counselors, (4) ways to deal with these barriers, (5) facilitators or rewards of being a counselor, and (6) perceived effectiveness.The problem categories were (a) conflicts within families; (b) past experiences and personality; and (c) daily living with dementia. Ways of helping caregivers deal with these problems included problem clarification from the perspectives of the key players. An important barrier was reluctance to be helped. This was dealt with by acknowledging caregivers' need for control over situations. Additional effects of participation in the NYUCI observed by the counselors were reduction of anger and awareness of more and new options for dealing with dementia. CONCLUSIONS: Person- or family-centered care offers new perspectives on problems that are seemingly unmanageable. We hypothesize that seeing new and more options is a direct effect of this person-centered counseling. This might be an important outcome to be measured in future studies

Assessing an evidence-based intervention for spouse caregivers of persons with Alzheimer’s disease: results of a community implementation of the NYUCI in Israel

Objectives: Alzheimer’s disease (AD) affects not only the person with the illness, but family caregivers as well. The NYU Caregiver Intervention (NYUCI), a psychosocial intervention which has demonstrated both short and long-term benefits for caregivers, has been used widely in the United States and in Australia and England. The Israeli study was a hybrid between a community implementation study and a randomized controlled trial (RCT) of the NYUCI in a non-English speaking country. Method: A sample of 100 spouse caregivers participated in trial comparing the NYUCI provided by ten Israeli clinicians (enhanced care), to support group participation (usual care). The major outcome of interest was caregiver depressive symptoms, measured with the Geriatric Depression Scale. A linear random effects regression model controlling for factors associated with depressive symptoms was used to plot the longitudinal trajectories of depressive symptoms over the two-year study period and compare outcomes for the enhanced care and control groups. Results: One hundred spouse caregivers enrolled, of whom 81 provided data at baseline and at one or more post intervention assessments. The Israeli adaptation of the NYUCI was effective in reducing depressive symptoms reported by caregivers compared to their counterparts in the control group, b= −1.29 [95%CI (−2.43, −0.15)], p= .0265. Conclusion: While implementing a randomized controlled trial of an intervention developed and tested in traditional research settings using community providers in Israel, posed unique challenges, the study demonstrated benefits to caregivers. As a result, 30 municipalities in Israel are currently implementing an ongoing adaptation of the NYUCI

Informal care for persons with dementia: characteristics and evidence-based support interventions.

A vast majority of persons with dementia receive help and support from family members, friends and neighbours. Research shows a high reliance on informal long-term care for persons with dementia. In this chapter we discuss the role of informal care in dementia care and the sustainability of that role. Societal changes have an impact on the availability of informal carers and on the division of tasks between formal and informal care. Taking care of a family member can be rewarding as well as challenging. Depending upon the stage of the dementia process the challenges have differing characteristics and the burden changes. Evidence-based interventions have been developed to support either the person with dementia and their informal carer or the family network of the person with dementia. These interventions can alleviate challenges and support informal carers in their role

Cause of death and excess mortality in patients with lower-risk myelodysplastic syndromes (MDS): A report from the European MDS registry.

Information on causes of death (CoDs) and the impact of myelodysplastic syndromes (MDS) on survival in patients with lower-risk MDS (LR-MDS) is limited. A better understanding of the relationship between disease characteristics, clinical interventions and CoDs may improve outcomes of patients with LR-MDS. We prospectively collected data on patients with LR-MDS in the European MDS registry from 2008 to 2019. Clinical, laboratory and CoDs data were obtained. To examine MDS-specific survival, relative survival (RS) was estimated using national life tables. Of 2396 evaluated subjects, 900 died (median overall survival [OS]: 4.7 years; median follow-up: 3.5 years). The most common CoDs were acute myeloid leukaemia/MDS (20.1%), infection (17.8%) and cardiovascular disease (CVD; 9.8%). Patients with isolated del(5q) and with red cell transfusion needed during the disease course, had a higher risk of fatal CVD. The 5-year OS was 47.3% and the 5-year RS was 59.6%, indicating that most patients died due to their underlying MDS. Older patients (aged >80 years) and the lowest-risk patients were more likely to die from competing causes. This study shows that MDS and its related complications play crucial role in the outcome of patients with LR-MDS