A model for quality of life measures in patients with dementia: Lawron's next step

The introduction of drugs that are claimed to improve cognitive function and activities of daily living in patients with Alzheimer's disease raises the question of whether these drugs also influence dementia patients' quality of life (QOL). We describe a hierarchic model of QOL of dementia patients, which can guide the development of measurement instruments. After initially discussing broadly QOL research, we focus on two highly important characteristics of the concept, its broadness and subjectivity, against the background of the relevant literature on QOL in dementia. Dementia-specific dimensions and domains are presented. We identify psychological well-being as the core dimension for QOL of patients with dementia. Copyright © 2004 S. Karger AG, Basel

Hierarchical decline of the initiative and performance of complex activities of daily living in dementia

Objectives: While basic activities of daily living hierarchically decline in dementia, little is known about the decline of individual instrumental activities of daily living (IADLs). The objective of this study was to assess initiative and performance deficits in IADLs in dementia. Methods: A total of 581 carers completed the revised Interview for Deterioration in Daily Living Activities in Dementia 2 to rate their relative’s everyday functioning. Results: Initiating and performing IADLs deteriorated hierarchically, while people with dementia were consistently most impaired in initiating using the computer and managing finances. Initiating preparing a cold or hot meal and managing finances were more impaired than their performance, whereas performing maintaining an active social life for example were more impaired than their initiative. Conclusion: Findings can help identify the severity of dementia by understanding deficits in initiative and performance. This study has implications for the development of targeted interventions depending on the stage of dementia

Is it feasible to deliver a complex intervention to improve the outcome of falls in people with dementia? A protocol for the DIFRID feasibility study

Background: People with dementia (PWD) experience ten times as many incident falls as people without dementia. Little is known about how best to deliver services to people with dementia following a fall. We used an integrated, mixed-methods approach to develop a new intervention which combines theory generated via a realist synthesis and data on current provision and pathways, gathered through a prospective observational study as well as qualitative interviews, focus groups, and ethnographic observation. This intervention is to be tested in a feasibility study in the UK National Health Service. Methods: People living with dementia in one of three geographical areas will be eligible for the study if they experience a fall requiring healthcare attention and have an informal carer. Potential participants will be identified by community services (primary care, paramedics, telecare), secondary care (ED; facilitated discharge services; rehabilitation outreach teams) and research case registers. Participants will receive a complex multidisciplinary intervention focused on their goals and interests for up to 12 weeks. The intervention will be delivered by occupational therapists, physiotherapists and rehabilitation support workers. Feasibility outcomes will include recruitment and retention, suitability and acceptability of outcome measures and acceptability, feasibility and fidelity of intervention components. PWD outcome measures will include number of falls, Montreal Cognitive Assessment (MOCA), European Quality of Life Instrument (EQ-5D-5L), Quality of Life–Alzheimer’s Disease Scale (QOL-AD), Modified Falls Efficacy Scale (MFES) and Goal Attainment Scaling (GAS). PWD outcome measures completed by an informal carer will include Disability Assessment for Dementia (DAD), EQ-5D-5L Proxy, QoL-AD Proxy and a Health Utilisation Questionnaire (HUQ), The carer outcome measure will be the Zarit Burden Interview (ZBI). An embedded process evaluation will explore barriers and facilitators to recruitment and intervention delivery. Discussion: The study results will inform whether and how a larger multicentre RCT should be undertaken. A full RCT would have the potential to show how outcomes can be improved for people with dementia who have fallen. Ethics and dissemination: The National Research Ethics Service Committee Newcastle and North Tyneside 2 approved the feasibility study. Trial registration: International Standard Randomised Controlled Trial Registry Registration number: ISRCTN41760734 Date of registration: 16/11/201

Nonpharmacological interventions to improve depression, anxiety, and quality of life (QoL) in people with dementia: an overview of systematic reviews

This overview aimed to systematically synthesize evidence from existing systematic reviews to signpost practitioners to the current evidence base on nonpharmacological interventions to improve depression, anxiety, and quality of life (QoL) in people with dementia and to discuss priorities for future research. The databases MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials were searched in August 2017 with an updated search in January 2019. Fourteen systematic reviews of randomized controlled trials of nonpharmacological interventions were identified. Dementia stage was rated moderate or severe in the majority of the reviews and type of dementia varied. Interventions reported to be effective were cognitive stimulation (QoL: standardized mean difference [SMD] = 0.38), music-based therapeutic interventions (depression: SMD = −0.27, anxiety: SMD = −0.43, QoL: SMD = 0.32), and psychological treatments (mainly cognitive behavior therapy; depression: SMD = −0.22, anxiety: MD = −4.57). Although health-care professionals are recommended to continue using these approaches, future research needs to focus on the type and form of interventions that are most effective for different stages and types of dementia

Factors Associated with Self and Informant Ratings of the Quality of Life of People with Dementia Living in Care Facilities: A Cross Sectional Study

There is no consensus regarding the optimal approach to assessment of the quality of life of people with dementia. We undertook the present study to describe and determine the factors associated with ratings of the quality of life of a cohort of people with dementia living in a residential care facility.351 people with dementia living in residential care facilities, and their staff and family informants participated in this cross sectional observational study. Quality of life was measured using self (Quality of Life in Alzheimer's Disease [QoL-AD] scale), and informant (QoL-AD and Alzheimer's Disease Related QoL Scale) reports. 226 people (64%) with dementia (median MMSE 17; 12-21) were able to self rate the QoL-AD scale and these subjects' ratings were compared to ratings by staff and family. Both staff and family informant ratings of the QoL-AD underestimated self ratings (mean difference -7.8, 95% CI -8.8, -6.7 for staff rated QoL-AD; and mean difference -7.2, 95% CI -8.5, -6.0 for family rated QoL-AD). Self ratings of QoL were lower among people who were restrained, had fallen or had pain. Informant ratings of the QoL of the participants with dementia were consistently and significantly lower for people with severe cognitive impairment, who had fallen, had presence of neuropsychiatric symptoms, or where care giver distress was present. Documented restraint, reported pain and neuropsychiatric symptoms were independently associated with lower self rating of the QoL-AD in multivariate models. Cognitive impairment, case conferencing, hospitalizations and neuropsychiatric symptoms were found to be independently associated with staff rated ADRQL.The majority of people with dementia living in residential care facilities can rate their own QoL. Informant ratings underestimate self ratings of QoL of people with dementia, and appear to be associated with factors which are not associated with self ratings

Having a lot of a good thing: multiple important group memberships as a source of self-esteem.

Copyright: © 2015 Jetten et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are creditedMembership in important social groups can promote a positive identity. We propose and test an identity resource model in which personal self-esteem is boosted by membership in additional important social groups. Belonging to multiple important group memberships predicts personal self-esteem in children (Study 1a), older adults (Study 1b), and former residents of a homeless shelter (Study 1c). Study 2 shows that the effects of multiple important group memberships on personal self-esteem are not reducible to number of interpersonal ties. Studies 3a and 3b provide longitudinal evidence that multiple important group memberships predict personal self-esteem over time. Studies 4 and 5 show that collective self-esteem mediates this effect, suggesting that membership in multiple important groups boosts personal self-esteem because people take pride in, and derive meaning from, important group memberships. Discussion focuses on when and why important group memberships act as a social resource that fuels personal self-esteem.This study was supported by 1. Australian Research Council Future Fellowship (FT110100238) awarded to Jolanda Jetten (see http://www.arc.gov.au) 2. Australian Research Council Linkage Grant (LP110200437) to Jolanda Jetten and Genevieve Dingle (see http://www.arc.gov.au) 3. support from the Canadian Institute for Advanced Research Social Interactions, Identity and Well-Being Program to Nyla Branscombe, S. Alexander Haslam, and Catherine Haslam (see http://www.cifar.ca)