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Unmet Support Needs of Informal Caregivers of Older Adults

Due to projected growth of the 65-and-older population and concerns of an impending care gap, reliance on informal caregivers is expected to increase. Improving support for informal caregivers is viewed as a national priority, yet research related to the unmet support needs of informal caregivers is limited.

Fri, 06/07/2019 - 14:44

Caregiver Burdens of Family Members with Alzheimer's Disease

Alzheimer's disease is the sixth leading cause of death in the United States and more than five million Americans are living with the disease (Alzheimer's Association, 2016). Alzheimer's disease takes a devastating toll on caregivers. According to Richardson, Lee, Berg-Weger, and Grossberg (2013), many factors influence the perceived burden of caring for a relative or friend with Alzheimer's disease (Richardson et al., 2013). These factors include characteristics of the caregiver, such as kinship ties, gender, psychological resources, and coping strategies.

Fri, 06/07/2019 - 13:17

The Association Between Sexual Disinhibition and Family Caregiver Burden in Dementia

Dementia caregiving is costly for society and has been linked to many adverse outcomes in the caregiver, including financial and occupational strain, greater psychological distress, and physical comorbidities, together termed “caregiver burden.” Certain dementia care recipient characteristics, such as the presence of neuropsychiatric symptoms (e.g., hallucinations, agitation), are associated with high caregiver burden. One neuropsychiatric symptom, sexual disinhibition, has received little research attention.

Fri, 06/07/2019 - 12:54

Transition of Persons with Developmental Disabilities from Parental to Sibling Co-Residential Care: Effects on Sibling Caregiver Well-Being and Family Functioning

Comprehensive improvements in medical care, technology and residential settings have resulted in persons with developmental disabilities (DD) advancing to older age and outliving parental caregivers (Heller & Arnold, 2010). Typical siblings are expected to become the primary caregiver to their sibling with DD when parents become ill or die and unable to provide care (Burke, Fish, & Lawton, 2015; Heller & Arnold, 2010).

Wed, 05/29/2019 - 10:12

Riding out the storm: A grounded theory study of Dementia caregiver grief and bereavement following family member death in long-term care settings

Purpose: The purpose of this study is to explore the grief/bereavement process of Alzheimer's Disease and Related Dementias (ADRD) caregivers following death of a family member in long-term care (LTC) and develop a theoretical model of this phenomenon based upon in-depth individual interviews. There is limited evidence examining ADRD caregiver grief and bereavement following family member death in LTC settings. Grounded Theory methodology has not been utilized to explore this phenomenon.

Mon, 04/08/2019 - 16:32

Experiences and health care needs of older people with End Stage Renal Disease managed without dialysis in Thailand during the last year of life

BACKGROUND: There is a growing population of older patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and services have yet to be developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care and suffer from symptoms that could be better managed.

OBJECTIVE: This qualitative study explored experiences and health care needs during the last year of life among older people with ESRD, managed without dialysis, from the perspective of bereaved carers.

Thu, 07/20/2017 - 15:18

Application of the capability approach to health economics research involving informal carers of people with dementia

In the UK, the number of people with dementia is increasing along with life expectancy - over half of the £23bn annual cost of dementia is due to informal care time. Therefore, there is an economic argument for identifying clinically-effective and cost-effective ways to maintain and improve carer quality of life (QoL). This thesis explores the suitability of a capability based instrument, the ICECAP-O, for measuring QoL in informal carers of people with dementia. Methods: Systematic reviews, qualitative interviews, survey data and clinical trial data were used.

Thu, 07/20/2017 - 15:13

Caring women, shrewd strategies: the organizational dynamics of home health care

The AIDS epidemic is a driving force in the external policy environment, stimulating large-scale changes in health care organizations. Visiting Nurse Associations (VNAs), gendered organizations with a hundred year tradition of caring work in communities, responded to governmental initiatives with structural and functional changes. A case study of the development of the AIDS Care Program of the Visiting Nurse Service of New York (VNSNY) offers a unique opportunity to explore the exercise of strategy as health policy is translated into organizational practice.

Thu, 07/20/2017 - 15:12

Employment and coping strategies in carers of people with young onset dementia

Background and objectives Research into carers of people with young onset dementia (YOD) has highlighted that carers may experience more distress than late onset dementia (LOD) carers (e.g. Freyne, Kidd, Coen & Lawlor, 1999), and have specific needs which differ from those of LOO carers (e.g. Svanberg, Spectar & Slott, 2011). Difficulties with employment has been raised as a particular issue for this population (e.g. van Vliet, de Vugt, Bakker, Koopmans & Verhey, 2010), yet no qualitative study has examined the factors influencing carers' experience of employment.

Thu, 07/20/2017 - 15:12

Dementia caregiving burden and breakdown

This article summarises PhD research undertaken by the author and provides readers with the carer assessment tools validated in the study. [Journal abstract]

Thu, 07/20/2017 - 15:09