Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort
AbstractObjectiveThe Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects evaluates familial frontotemporal lobar degeneration (FTLD) kindreds with MAPT, GRN, or C9orf72 mutations. Objectives were to examine whether health‐related quality of life (HRQoL) correlates with clinical symptoms and caregiver burden, and whether self‐rated and informant‐rated HRQoL would correlate with each other.MethodsIndividuals were classified using the Clinical Dementia Rating (CDR®) Scale plus National Alzheimer's Coordinating Center (NACC) FTLD. HRQoL was measured with DEMQOL and DEMQOL‐proxy; caregiver burden with the Zarit Burden Interview (ZBI). For analysis, Pearson correlations and weighted kappa statistics were calculated.ResultsThe cohort of 312 individuals included symptomatic and asymptomatic individuals. CDR® plus NACC FTLD was negatively correlated with DEMQOL (r = −0.20, P = .001), as were ZBI and DEMQOL (r = −0.22, P = .0009). There was fair agreement between subject and informant DEMQOL (κ = 0.36, P <.0001).ConclusionLower HRQoL was associated with higher cognitive/behavior impairment and higher caregiver burden. These findings demonstrate the negative impact of FTLD on individuals and caregivers.
Dementia palliative care in the acute psychiatric hospital: A feasibility study
AbstractPurposeWe explored the feasibility of a clinical pathway to identify hospitalized patients with dementia who would benefit from a palliative intervention.Design and MethodsConsecutive geropsychiatric admissions were screened for terminal dementia to be randomized to a palliative consultation vs usual care.FindingsA total of 43 of the 188 patients (23%) had dementia; however, dementia stages were severe but not terminal. The pathway was not feasible because of the lack of the target population in the inpatient setting for the intervention.Practice ImplicationsNew clinical pathways are needed to identify patients with dementia who would benefit from palliative care.
Polypharmacy in older adults: the role of the multidisciplinary team
Background Interest in the use of telehealth interventions to increase access to healthcare services is growing. Group-based interventions have the potential to increase patient access to highly needed services. The aim of this study was to systematically review the available literature on group-based video teleconference services. Methods The English-language literature was searched using Ovid MEDLINE, PubMed, PsycINFO and CINAHL for terms related to telehealth, group therapy and support groups. Abstracts were reviewed for relevance based on inclusion criteria. Multiple study types were reviewed, including open-label, qualitative and randomised controlled trial study designs. Data were compiled regarding participants, study intervention and outcomes. Specific areas of interest were the feasibility of and satisfaction with telehealth technology, as well as the effect of video teleconference delivery on group dynamics, including therapeutic alliance. Results Forty published studies met the inclusion criteria and were included in the review. Six were randomised controlled trials. Among the studies, there was a broad range of study designs, participants, group interventions and outcome measures. Video teleconference groups were found to be feasible and resulted in similar treatment outcomes to in-person groups. However, few studies were designed to demonstrate noninferiority of video teleconference groups compared with in-person groups. Studies that examined group process factors showed small decreases in therapeutic alliance in the video teleconference participants. Conclusions Video teleconference groups are feasible and produce outcomes similar to in-person treatment, with high participant satisfaction despite technical challenges. Additional research is needed to identify optimal methods of video teleconference group delivery to maximise clinical benefit and treatment outcomes.