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Extra care: viable for couples living with dementia?

PURPOSE: The perspectives of people with dementia and their care partners regarding "extra care" housing are currently unknown. The purpose of this paper is to report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners. DESIGN/METHOOLOGY/APPROACH: Fieldwork consisted of paired or 1-1 interviews and small focus groups with potential users of an alternative model of extra care support for people living with dementia in the South of England.

Tue, 05/14/2019 - 19:23

Helping lay carers of people with advanced cancer and their GPs to talk: an exploration of Australian users' views of a simple carer health checklist

The lay caregiving role is integral to advanced cancer care but places carers' health at risk. A supportive General Practitioner (GP) can help primary lay carers manage their health, if they disclose their concerns. A Needs Assessment Tool for Caregivers (NAT-C) was developed for carers to self-complete and use as the basis of a GP consultation, then tested in a randomised controlled trial. This paper reports a qualitative research study to determine the usefulness and acceptability of the NAT-C in the Australian primary care setting.

Mon, 03/25/2019 - 10:33

Family Matters: Counting Families In

This report seeks to highlight the perspectives of family carers within the development of a national strategy for people with learning disabilities. The report represents a synthesis of a broad range of views, collected through consultation workshops, correspondence, conversations with family carers, and a review of the relevant  literature. 

Mon, 09/10/2018 - 17:51

Still a long way to go in responding to people's needs

Outlines some important messages from a major project, carried out by Dementia Voice, to consult people with dementia and carers about the services they receive. The consultations were part of a larger project, funded by Devon social services, to help care agencies in Devon to develop guidelines for intermediate care for people with dementia.

Thu, 07/20/2017 - 15:23

A comparison of carers needs for service users cared for both in and out of area

Purpose – This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both carers of people placed both in area and out of area within a local Mental Health Learning Disabilities team in South London.

Thu, 07/20/2017 - 15:19

In our own words

Looks at what user consultation and empowerment mean to service users and carers themselves.

Thu, 07/20/2017 - 15:18

Using strengths-based practice to support culture change: an Australian experience

Workplaces across the globe have experienced an unprecedented pace of change. The effects of a problem focus, de-personalisation and over regulation in long-term care settings are experienced similarly by carers, residents, their families and nursing homes as a whole. A pathology focus is no longer appropriate, inviting a paradigm shift to explore how accessing the unique strengths and resources of all parties becomes an imperative role in changing organizational culture. This paper draws comparisons between the experiences and tasks of all those involved in care settings.

Thu, 07/20/2017 - 15:15

The important things in life

Decisions made on behalf of people with a learning disability and their families are often made without any input from the people they affect the most. Mencap's 'Listen and Learn' consultation programme was developed to find what is important to people with learning disabilities. The consultation used surveys, focus groups and interviews with people with learning disabilities, their family members or carers, Mencap members of staff and leaders of local Mencap groups.

Thu, 07/20/2017 - 15:13

Consulting service users: the Stroke Association Home Therapy Project

In 1999, the Stroke Association set up a project to promote home-based occupational therapy for patients who had had a stroke and been discharged home from hospital. As part of the service evaluation, focus groups for service users and carers were set up in two of the sites to consult users about the changes in their quality of life during the period of the home therapy. A total of 11 service users and 9 carers attended the groups, representing 30% of the service users and 27% of the carers involved in the project.

Thu, 07/20/2017 - 15:13

Carer satisfaction with telephone consultations in a community intellectual disability unit

This paper reports on a survey of carer satisfaction with telephone consultations with doctors in a community service for people with intellectual disability (also known as learning disability in the UK health services). A 10-item anonymized carer satisfaction questionnaire was sent out following telephone consultations over a 4 week period with questions about suitability, effectiveness, efficiency and appropriateness of telephone consultations. Out of 13 questionnaires sent, 11 were returned. There was a high level of satisfaction with accessibility, effectiveness and suitability.

Thu, 07/20/2017 - 15:12

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