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Disease progression

Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study

Rationale& Objective: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions.

Tue, 06/11/2019 - 11:49

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer's disease or related diseases? A systematic review of quantitative and qualitative studies

Background: This study aims to review the methodologies used to identify the needs, the existing needs assessment instruments and the main topics of needs explored among caregivers of patients with mild cognitive impairment to dementia.; Methods: MEDLINE, PsycINFO, The Cochrane Library and Web of science were searched from January 1980 to January 2017.

Mon, 01/21/2019 - 16:06

Meeting the Informational, Educational, and Psychosocial Support Needs of Persons Living With Dementia and Their Family Caregivers

Background and Objectives: Meeting the unique and changing needs of individuals living with Alzheimer's disease and their family caregivers can be very challenging given the dynamic and often unpredictable nature of the disease. Effective programs are available to help families manage the challenges they will face. Research Design and Methods: This article first describes the educational, information, and support needs of individuals living dementia and their family caregivers across all stages of Alzheimer's.

Wed, 11/21/2018 - 16:36

Factors affecting the health-related quality of life of caregivers of patients with muscular dystrophy

Muscular dystrophy (MD) is a group of progressive muscle weakness diseases. The caregiver burden, increasing as the disease progresses, can be associated with impaired health-related quality of life (HRQOL). The aims of this study were to investigate the HRQOL in caregivers of patients with MD and identify the factors associated with HRQOL. A cross-sectional assessment of caregiver HRQOL was performed with the Short Form-36 and compared with norms. The factors affecting HRQOL were investigated by patient and caregiver characteristics.

Wed, 10/24/2018 - 12:01

Patient perspectives on navigating the field of traumatic brain injury rehabilitation: a qualitative thematic analysis

Purpose: This study aimed to provide an understanding of the lived experience of rehabilitation in adults with traumatic brain injury (TBI) from hospital discharge up to four years post-injury. Materials and methods: We used a qualitative explorative design with semi-structured in-depth interviews. Twenty participants with TBI were included from a level I Trauma Center in Denmark at 1-4 years post-injury. Qualitative thematic analysis was applied for data analysis.

Tue, 10/16/2018 - 15:59

The Experience of Transitioning to a Caregiving Role for a Family Member with Alzheimer's Disease or Related Dementia

Background: Alzheimer's disease is a chronic, debilitating disease that currently affects an estimated 5.5 million Americans. The majority are being cared for at home by family caregivers, who are known to have higher levels of burden than any other group of caregivers.; Purpose: The purpose of this phenomenological study was to explore the lived experiences of people who transition to the role of caregiver for a family member with Alzheimer's disease or a related dementia.; Methods: The study used purposeful sampling.

Wed, 07/04/2018 - 16:10

Alzheimer's Disease: Individuals, Dyads, Communities, and Costs

Alzheimer's disease and related dementias (ADRD) affect over 5 million Americans. Over a typical disease course of 5-10 years, family caregivers provide the majority of the day-to-day hands-on on care for persons with dementia. Most caregivers enter this complex role with little training and inadequate household resources and they are tasked to navigate a fragmented health care system as well as a patchwork of community services. Our nation can and should do more to help family caregivers provide care in the home to their loved ones who suffer from dementia.

Mon, 06/11/2018 - 15:46

Recruiting older people into a large, community-based study of heart failure

This paper highlights some of the challenges encountered when recruiting older people with heart failure into longitudinal, community-based research. It draws on the experience gained in a study to provide insights into the palliative care needs of older people with heart failure and the timing and need for service interventions. Five hundred and forty-two people with heart failure (New York Heart Association (NYHA) stages II-IV) and 213 of their informal carers were recruited from primary care practices in four areas of the UK.

Thu, 07/20/2017 - 15:20

Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis

The study's rationale: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.

Aims and objectives: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.

Methodological design and justification: Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience.

Thu, 07/20/2017 - 15:20

Burden of Alzheimer's disease: population-based estimates and projections for New Zealand, 2006-2031

OBJECTIVE: To estimate the burden of Alzheimer's disease (AD, including 'mixed' dementia) in New Zealand in 2006, and project this burden out to 2031. METHOD: An incidence to prevalence methodology was utilized, the foundation of which is a discrete time Markov model allowing for multiple stages of disease (early vs late). Population estimates and projections, and all-cause mortality rates, were obtained from Statistics New Zealand.

Thu, 07/20/2017 - 15:12

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