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Experience

Bridging the divide: The adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39-93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data.

Tue, 05/14/2019 - 15:52

Dementia cafes: recommendations from interviews with informal carers

Purpose: Dementia cafes (also known as Alzheimer’s or memory cafes) have been running in the UK since 2000. The purpose of this paper is to report on the recommendations from recent research that interviewed family carers on their experiences of using the cafes. Design/methodology/approach: The research was carried out in cafes in and around London, and focussed on informal, unpaid carers’ experiences of using them. In total, 11 carers from five different dementia cafes were interviewed, using semi-structured questionnaires.

Wed, 04/10/2019 - 10:18

Psychometric properties and relations with coping and family strain of the Health Services and Caregiver Experience questionnaire (HSCE): an outcome measure of informal caregivers experience for inpatient care in Italy

Background In the last decade, the number of patients supported by informal caregivers has substantially increased. In the Italian healthcare context, informal caregivers’ experience of care is a new under-recognized construct, and no assessment tool is available. Measuring caregivers’ experience is important since in Italy the relationship between doctors and patients/relatives is still considered asymmetrical.

Mon, 04/08/2019 - 14:22

A qualitative study of carers' experiences of dementia cafes: a place to feel supported and be yourself

Background: Unpaid, informal carers or caregivers play an important role in supporting people living with dementia but the role can be challenging and carers themselves may benefit from support. Alzheimer’s, dementia or memory cafés are one such form of support . These cafés are usually provided in the voluntary sector and are a place where people with dementia and those supporting them, usually family carers, can meet with others in similar situations.

Mon, 03/25/2019 - 12:56

The experience of informal caregivers of patients with motor neurone disease: A thematic synthesis

Objective: Research is required in order to illustrate and detail the experiences of informal caregivers of patients with motor neurone disease (pwMND) to further advance the research base and to inform the development of future support structures and services. Due to the heterogeneous nature of caregiving for pwMND, one way in which this can be achieved is through a qualitative review. A qualitative thematic analysis of existing qualitative studies has not, to the best of the authors' knowledge, been previously undertaken.

Fri, 02/01/2019 - 12:27

Social networks, social support and social negativity: A qualitative study of head and neck cancer caregivers' experiences

Head and neck cancer is a serious form of cancer that can generate substantial physical and psychosocial morbidity. Informal caregivers can help patients to manage head and neck cancer and its emotional impacts, both during and after treatment. Caregivers, however, can experience considerable stress as a result of their caring activities. Supportive relationships can protect caregivers from psychosocial strain.

Wed, 12/19/2018 - 10:03

Modeling Cortisol Daily Rhythms of Family Caregivers of Individuals With Dementia: Daily Stressors and Adult Day Services Use

Objectives: The study examined the typical diurnal cortisol trajectory and its differential associations with an intervention, the adult day services (ADS) use, among a sample of family caregivers who experienced high levels of daily stress. Method: On hundred and sixty-five caregivers of individuals with dementia completed an 8-day diary on daily stressors, positive events, sleep quality, and ADS use. The caregivers also provided five saliva samples on each diary day.

Fri, 11/23/2018 - 09:47

Patient and Caregiver Interplay in Behavioral and Psychological Symptoms of Dementia: Family Caregiver’s Experience

The purpose of this study was to identify family caregivers’ experiences in managing the behavioral and psychological symptoms of dementia (BPSD) with particular focus on their interpersonal interactions with patient with dementia. Data were collected through focus-group interviews with 15 family caregivers from three local dementia-support centers located in Seoul. Data were analyzed using content analysis.

Tue, 11/20/2018 - 14:59

Coping with patients suffering from overactive bladder: experiences of family caregivers in Hong Kong

This article examines the experiences of family caregivers working with patients affected by overactive bladder ( OAB) in Hong Kong. Chronic diseases create physical and emotional burdens not only for patients but also for family caregivers, who often experience physical and emotional burnout and social impairment. Extensive literature has pertained to caregiver experiences in western and non-western settings; however, few studies have addressed the livelihoods and experiences of family caregivers of patients with OAB in ethnic Chinese communities.

Tue, 11/20/2018 - 13:17

To be or not to be? A caregiver's question: the lived experience of a stroke family during the first 18 months poststroke

Background: Disability following a stroke often requires family, commonly a spouse, to provide care enabling the stroke survivor to return home. Immediate or extended family and friends may help provide direct care or support the primary caregiver. While family members share the common stroke experience, this is lived within the context of separate lives. Research examining the individual nuances, roles and contribution of family and/or friends forming part of collective stroke networks, has largely been overlooked.

Fri, 11/16/2018 - 11:16