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Engaging multi-stakeholder perspectives to identify dementia care research priorities

Objectives: The purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research. Methods: Using a community-engaged research approach, a Stakeholder Advisory Council (SAC) consisting of diverse membership including persons living with dementia and family caregivers was convened.

Tue, 08/30/2022 - 16:22

Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

Background: An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life.

Tue, 08/30/2022 - 16:15

Effects of the tailored activity program (TAP) on dementia-related symptoms, health events and caregiver wellbeing: a randomized controlled trial

Background: People living with dementia (PLWD) and caregivers are adversely impacted by lack of meaningful activity leading to worse symptoms and impaired quality-of-life. There is a critical need to develop effective and well-tolerated treatments that mitigate clinical symptoms, engage PLWD and support caregiver wellbeing. We tested whether, compared to attention control, the Tailored Activity Program (TAP) reduced clinical symptoms and health-related events, and improved caregiver wellbeing, and if TAP activities were well-tolerated.

Tue, 08/30/2022 - 15:02

Effects of family-based dignity intervention and expressive writing on anticipatory grief of family caregivers of patients with cancer: a study protocol for a four-arm randomized controlled trial and a qualitative process evaluation

Background: Family caregivers of dying cancer patients are affected by grief experiences and bereavement complications. Several approaches such as psycho-emotional care and an increase in spirituality have been suggested to diminish these complications. However, the knowledge about the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients is limited.

Tue, 08/30/2022 - 14:55

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial

Background: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers’ quality of life.

Sat, 08/27/2022 - 12:26

Does Unpaid Caregiving Erode Working Hours Among Middle-Aged Chinese Adults?

Background: Middle-aged adults are commonly confronted with the burden of paid work and multiple caregiving roles. Objectives: This paper examines the relationship between weekly hours of unpaid caregiving and hours of work using data from the baseline survey of the China Health and Retirement Longitudinal Study. Methods: The analysis was conducted on a nationally representative sample of 3645 working-age Chinese adults aged 45–60 years who were not farming and had a young grandchild and/or a parent/parent-in-law.

Thu, 08/25/2022 - 16:42

Development of a short form of the Singapore Caregiver Quality of Life Scale – Dementia: SCQOLS-D-15

Background: The Singapore Caregiver Quality of Life Scale – Dementia (SCQOLS-D), developed based on the Singapore Caregiver Quality of Life Scale (SCQOLS), comprises 5 domains and 63 items. It has been shown to be a valid and reliable measurement scale. Objective: This study aimed to develop and evaluate a short form of the SCQOLS-D. Methods: Data were collected from 102 family caregivers of person with dementia in Singapore. Candidate items were shortlisted by factor analysis, correlation and best subset regression.

Wed, 08/24/2022 - 17:09

Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey

Background: The demographic and social changes associated with population aging and the increasing incidence of chronic diseases underscore the importance of the role of informal carers. The number of informal carers is increasing and negative consequences associated with providing care, such as burnout, are known. However the influence of socioeconomic and psychological factors on the need for respite have not been well characterized to date. Informal care represents an essential component of health care systems and long-term care.

Wed, 08/24/2022 - 15:26

Cost analysis of informal care: estimates from a national cross-sectional survey in Sweden

Background: Over the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers’ overall health. However, estimates of the social costs of informal care based on national data on individuals are currently scarce.

Wed, 08/24/2022 - 12:59

Digital personal assistants are smart ways for assistive technology to aid the health and wellbeing of patients and carers

Background: Digital health solutions such as assistive technologies create significant opportunities to optimise the effectiveness of both health and social care delivery. Assistive technologies include ‘low-tech’ items, such as memory aids and digital calendars or ‘high-tech’ items, like health tracking devices and wearables. Depending on the type of assistive devices, they can be used to improve quality of life, effect lifestyle improvements and increase levels of independence.

Wed, 08/24/2022 - 12:38

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