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Young onset dementia

The experiences of those affected by parental young onset dementia: A qualitative systematic literature review

Objectives: To develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years. Method: A critical appraisal and thematic synthesis of the available qualitative literature regarding the lived experience of individuals whose parent has a diagnosis of young onset dementia. A three-stage approach for conducing thematic synthesis was followed.

Thu, 09/01/2022 - 10:12

Family carers’ narratives of the financial consequences of young onset dementia

Background: Individuals with young onset dementia and their families face unique challenges, such as disruptions to their life cycle and relationships and a dearth of appropriate supports. Financial consequences have also been noted in the literature yet have not been explored in-depth. Objective: The purpose of this research was to qualitatively explore carers’ experiences of financial consequences resulting from the young onset dementia of a family member and how these consequences may be managed.

Wed, 08/17/2022 - 16:26

Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study

OBJECTIVES: The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration.

Mon, 10/14/2019 - 12:18

Quality of life and depression in carers of patients with early onset dementia

Objective: To investigate the quality of life (QoL) and depression and its correlates in carers living with early onset dementia (EOD) patients.

Method: The subjects were 49 carers, either married to or cohabiting with EOD patients, 38 with Alzheimer's disease and 11 with other types of dementia. The Quality of Life – Alzheimer Disease scale (QoL-AD) and Geriatric Depression Scale – 15 items (GDS-15) were used.

Thu, 07/20/2017 - 15:20

The needs of young people with young-onset dementia and their carers

Young people who develop dementia and their carers have all the distressing symptoms of older people who have this condition but with the added problems of having a career, financial commitments and often a young family. Explores the condition and the help that is available.

Thu, 07/20/2017 - 15:19

The experience of caring for a partner with young onset dementia: how younger carers cope

The coping strategies adopted by six carers to adapt to changes in their relationship with their partner with young onset dementia are explored. All were recruited from the north west of England and interpretative phenomenological analysis was used to analyse the data.

Thu, 07/20/2017 - 15:19

Support to family carers of patients with frontotemporal dementia

OBJECTIVES: To examine the provision of support to patients with frontotemporal dementia (FTD) and their family carers compared with patients with early onset Alzheimer's dementia (AD) and their carers, and the carers' satisfaction with the support. METHOD: Data came from 60 dyads of patients with dementia and their principal family carers, 23 subjects with frontotemporal dementia and their 23 carers, and 37 subjects with early onset Alzheimer's disease and their 37 carers. RESULTS: Patients with a frontotemporal dementia diagnosis were significantly more frequently offered stays in nursing

Thu, 07/20/2017 - 15:18

Awareness of social and emotional functioning in people with early-stage dementia and implications for carers

Objectives: This study explores the extent to which awareness of social and emotional function is reduced in early-stage dementia and whether this relates to the quality of life of the person with dementia (PwD), the quality of the relationship between the PwD and carer and carer stress.

Thu, 07/20/2017 - 15:14

Early onset dementia: living at home with nursing support

In this video we meet Jim and Janet Swift, both keen travellers until Janet was diagnosed with dementia at the age of 58. Jim's account of their experience illustrates the widespread effect of a very rapid deterioration, and explores the sense of loss and loneliness that can be part of the caring role. His account also highlights the need for skilled, experienced support for carers – in this case provided by an Admiral Nurse - together with access to regular breaks from the caring role.

Thu, 07/20/2017 - 15:12

Selfhood in younger onset dementia: transitions and testimonies

Younger people with dementia and their carers are an overlooked population for research, policy and practice attention. In this study, data were collected from both the United States and the UK in order to explore the meaning and construction of selfhood and identity.

Thu, 07/20/2017 - 15:12

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