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A mixed methods systematic review of informal caregivers' experiences of fall risk among community‐dwelling elders with dementia

Background: Evidence on effective fall prevention strategies for community‐dwelling elders with dementia is limited, although these elders are at high risk of falling. Informal caregivers may play an essential role in managing fall risk for elders with dementia. Thus, understanding caregiver's experiences is critically important. Objectives: This systematic review aims to (a) identify caregivers' perceptual, emotional and behavioural responses to fall risk in elders with dementia and (b) examine the outcomes and effects of caregiver behavioural responses.

Wed, 06/08/2022 - 16:08

The meaning of autonomy when living with dementia: A Q-method investigation

Background and Aims: Sensitivity to the rights of people with dementia is a key principle cited in the World Health Organisation's global action plan on dementia. Some critics question whether rights-based approaches embody loose and ill-defined ideas incapable of bringing about meaningful change. Exercising the right to autonomy is considered a core problem for people living with dementia. The tradition of individual sovereignty dominates ideas about autonomy, although the person as an individual is not a cross-culturally universal concept.

Wed, 06/08/2022 - 13:05

Making the Invisible Companion of People with Dementia Visible in Economic Studies: What Can We Learn from Social Science?

The dyadic perspective is important to understand the mutual influence and interdependence of both the person living with dementia and their care partner. This perspective is routinely adopted in social research programs for dementia and many dyadic interventions have been developed. However, economic evaluation and modelling to date has often failed to incorporate caregivers’ perspectives, and their respective costs and outcomes while giving care for the person with dementia.

Wed, 06/08/2022 - 13:00

Making Qualitative Interviews in Music Therapy Research More Accessible for Participants Living With Dementia – Reflections on Development and Implementation of Interview Guidelines

Purpose: This paper reports findings from a project that sought to develop accessible guidelines for including people with dementia in qualitative interviews in a music therapy study, based on experience from people previously involved in qualitative music therapy research. Method: People with previous experience of qualitative music therapy research were invited to participate in semi-structured interviews about how the interview process could be made more accessible. Participants included four family-caregivers and three music therapy-researchers.

Wed, 06/08/2022 - 12:54

Long-term effects of telephone-based cognitive-behavioral intervention for family caregivers of people with dementia: Findings at 3-year follow-up

Background: Long-term outcomes are of particular importance in evaluating interventions for family caregivers of people with dementia (PwD). So far, evidence for long-term effects (>6 months postintervention) is limited to four interventions. Objective: We examined the long-term effects of Tele.TAnDem, a telephone-based cognitive-behavioral therapy (CBT) intervention, on a variety of outcomes at 3-year follow-up, the longest follow-up of any intervention study for caregivers of PwD (without continuous support).

Wed, 06/08/2022 - 12:47

"A Little Bit of Their Souls": Investigating the Concept of Dignity for People Living With Dementia Using Caregivers' Blogs

Background: Dignity is an important component of quality of life and a core value of family nursing care. Few studies have explored dignity in community-dwelling adults with dementia. Methods: This study used blogs written by caregivers to explore the concept of dignity in dementia caregiving. A template analysis of blogs written by family caregivers of people with dementia was conducted.

Tue, 06/07/2022 - 16:43

Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England

Background: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them.

Tue, 06/07/2022 - 16:03

Innovative methods for involving people with dementia and carers in the policymaking process

Background: There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care.

Mon, 06/06/2022 - 17:04

Informal carers' support needs when caring for a person with dementia – A scoping literature review

Background: Informal carers of people with dementia report having unmet needs for support and few supportive interventions have been shown to be effective. There is a need to develop needs assessment instruments and supportive interventions with a holistic and person‐centred approach to meet the various and complex needs of carers. Objectives: The aim of this study was to provide an overview of carers' support needs when caring for people with dementia with the objectives to map and synthesise knowledge on key concepts of carers' support needs.

Mon, 06/06/2022 - 15:19

An Individual Cognitive Stimulation Therapy App for People With Dementia and Their Carers: Protocol for a Feasibility Randomized Controlled Trial

Background: There is a need for more resources to support the cognition and quality of life of people with dementia. The individual cognitive stimulation therapy (iCST) app aims to provide cognitive stimulation and social interaction to people with dementia and carers through interactive touchscreen technology. The iCST app has been developed according to the principles of CST and iCST, which have previously shown to improve the cognition and quality of life of people with dementia and benefit the relationship between the person with dementia and his/her carer.

Sun, 06/05/2022 - 21:27

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