Caregiver strain and dementia

BACKGROUND: The Reducing Disability in Alzheimer's Disease in Kansas City (RDAD-KC) intervention has been shown to improve the health of individuals with dementia and caregiver dyads. This manuscript reports the results of implementing the RDAD among individuals with intellectual disabilities and caregiver dyads. METHODS: Nine community agencies deployed the 12-week intervention. We assessed changes in individuals with intellectual disabilities' behavioural symptom related severity and physical activity, and caregivers' behavioural symptom-related distress, unmet needs, and caregiver strain...

BACKGROUND: Dementia is often associated with functional impairments that limit the independence of persons living with dementia (PwD). As such, many PwD often require a higher level of support provided by persons referred to as caregivers. Such caregiving activities tend to strain and stress the caregiver. Nonetheless, Ghana lacks empirical evidence and understanding of the effects of caring for PwD on the lives of primary caregivers. To help narrow this knowledge gap, we explored the perspectives of primary caregivers about the impacts of caring for PwD in Ghana...

BACKGROUND AND OBJECTIVES: Driving retirement can be a necessary but challenging and emotionally complex transition, especially for people living with dementia. This pilot study evaluated the utility of CarFreeMe™-Dementia (CFM™-D), a telehealth intervention providing tailored education and social support to those living with dementia and their care partners, as they prepare for or adjust to driving retirement. Delivered by empathetic health professionals, CFM™-D is a person-centric, flexible program tailored to address challenges specific to the participants' driving retirement stage and individualized contexts...

BACKGROUND: The United States faces a growing challenge with over 6.5 million people living with dementia (PLwD). PLwD and their caregivers struggle with cognitive, functional, behavioral, and psychosocial issues. As dementia care shifts to home settings, caregivers receive inadequate support but bear increasing responsibilities, leading to higher healthcare costs. In response, the Centers for Medicare & Medicaid Services (CMS) introduced the Guiding an Improving Dementia Experience (GUIDE) Model...

BACKGROUND: CLN3 disease (also known as CLN3 Batten disease or Juvenile Neuronal Ceroid Lipofuscinosis) is a rare pediatric neurodegenerative disorder caused by biallelic mutations in CLN3. While extensive efforts have been undertaken to understand CLN3 disease etiology, pathology, and clinical progression, little is known about the impact of CLN3 disease on parents and caregivers. Here, we investigated CLN3 disease progression, clinical care, and family experiences using semi-structured interviews with 39 parents of individuals with CLN3 disease...

 Alzheimer's disease (AD) affects more than 40 million people worldwide and is the leading cause of dementia. This disease is a challenge for both patients and caregivers and puts a significant strain on the global healthcare system. To address this issue, the Lancet Commission recommends focusing on reducing modifiable lifestyle risk factors such as hypertension, diabetes, and physical inactivity. Passive pulsatile shear stress (PPSS) interventions, which use devices like whole-body periodic acceleration, periodic acceleration along the Z-axis (pGz), and the Jogging Device, have shown significant systemic and cellular effects in preclinical and clinical models which address these modifiable risks factors...

BACKGROUND AND OBJECTIVES: Psychoeducation interventions using distance learning modalities to engage caregivers in active learning environments have demonstrated benefits in enhancing caregiving mastery. However, few of these programs have been specifically adapted to develop mastery in Black caregivers. RESEARCH DESIGN AND METHODS: A multi-method approach was carried out to assess Caregiving While Black (CWB), including pre-post surveys and in-depth interviews...

OBJECTIVE: We developed the Technology in Caring Questionnaire (TCQ) to assess the use of technology-based strategies by dementia caregivers. METHODS: One hundred caregivers completed a survey that included TCQ items along with measures of technology proficiency and patient and caregiver-centered outcomes. RESULTS: The final 34-item TCQ scale had adequate to excellent internal consistency (raw Cronbach alpha = 0.75; standardized Cronbach alpha = 0...

BACKGROUND: Cognitive impairment is common in Parkinson's disease (PD), but care needs and resource use for those with significant cognitive impairment are not well established. METHODS: 675 participants with PD from the international Care of Late-Stage Parkinsonism (CLaSP) study were grouped into those without (n = 333, 49%) and with cognitive impairment (MMSE < 24/30 or diagnosis of dementia or Mild Cognitive Impairment; n = 342, 51%) and their clinical features, care needs and healthcare utilisation compared...

OBJECTIVES: Chinese American family caregivers of persons with Alzheimer's disease and related dementia (ADRD) are a vulnerable but understudied population. The goal of this qualitative study was to examine their caregiving experiences and psychosocial distress process and explore intervention strategies. METHODS: In-depth individual interviews were conducted with 18 Chinese American dementia caregivers. All interviews were transcribed verbatim; thematic content analysis was conducted to construct a conceptual framework...

As the U.S. population ages, dementia due to Alzheimer's or other disease is concerning for healthcare providers. Family caregivers (FCGs) of persons with dementia (PWDs) may experience negative outcomes. The University of California, Davis, Health (UCDH) Alzheimer's and Dementia Care (ADC) Program provides care management for PWDs and their FCGs. This pilot study evaluates the program's effect on FCG depression, strain, and distress. Despite an increase in dementia severity in PWDs, FCGs experienced decreased levels of depression, strain, and distress following 12 to 18 months in the UCDH ADC Program...

BACKGROUND: With the increase in the aging population, informal caregivers have become an essential pillar for the long-term care of older individuals. However, providing care can have a negative impact and increase the burden on caregivers, which is a cause for concern. OBJECTIVE: This study aimed to comprehensively depict the concept of "informal caregiver burden" through bibliometric and content analyses. METHODS: We searched the Web of Science (WoS) database to obtain bibliometric data and included only papers published between 2013 and 2022...

INTRODUCTION: Non-professional care partners play an important and often evolving role in the care of persons living with Alzheimer's disease (PLWAD). We investigated two elements of the care partner experience, namely time and strain incurred by care partners providing care to PLWAD across the severity spectrum. METHODS: Data gathered from the Alzheimer's Disease Patient and Caregiver Engagement (AD PACE) What Matters Most (WMM) study series were analyzed to determine how much time care partners spent providing care to PLWAD based on where the care recipients lived...

BACKGROUND AND OBJECTIVES: Hospitalized persons living with dementia are at risk for functional decline, behavioral symptoms of distress, and delirium, all persisting in the postacute period. In turn, family care partners (FCPs) experience increased anxiety and lack of preparedness for caregiving, compounding existing strain and burden. Family-centered Function-focused Care (Fam-FFC) purposefully engages FCPs in assessment, decision-making, care delivery, and evaluation of function-focused care during and after hospitalization (within 48 hours of discharge, weekly telephone calls for a total of 7 additional weeks, then monthly for 4 months)...

OBJECTIVES: Studies of retrospective personality change with dementia consistently find caregivers report large changes in personality (e.g., increases in neuroticism) of their care recipients compared to before dementia. This work seeks to replicate the established pattern of personality change, extend it to change in psychological distress, well-being, and social connection, and evaluate whether changes vary by stage of dementia. METHODS: Caregivers of people with dementia (N = 188) reported on the psychological and social health of their care recipient currently and how they were before they developed dementia...

BACKGROUND: Limited access to specialized palliative care exposes persons with late-stage Alzheimer's disease and related dementias (ADRD) to burdensome treatment and unnecessary hospitalization and their caregivers to avoidable strain and financial burden. Addressing this unmet need, the purpose of this study was to conduct a randomized clinical trial (RCT) of the ADRD-Palliative Care (ADRD-PC) program. METHODS: The study will use a multisite, RCT design and will be set in five geographically diverse US hospitals...

INTRODUCTION: Hospitalized patients with dementia are more likely to be discharged to long-term care compared to persons without dementia. Little research has been conducted to examine the associations of caregiver preparedness and strain with desire to seek long-term care in hospitalized persons with dementia at discharge. The purpose of this study was to examine caregiver preparedness and strain as factors associated with desire to seek long-term care admission in caregivers of persons with dementia at hospital discharge...

Objectives: Studies of retrospective personality change with dementia consistently find caregivers report large changes in personality (e.g., increases in neuroticism) of their care recipients compared to before dementia. This work seeks to replicate the established pattern of personality change, extend it to change in psychological distress, well-being, and social connection, and evaluate whether changes vary by stage of dementia. Methods: Caregivers of people with dementia ( N =194) reported on the psychological and social health of their care recipient currently and how they were before they developed dementia...

Dementia can be difficult for married couples for many reasons, including the introduction of caregiving burden, loss of intimacy, and financial strain. In this study, we investigated the impact of dementia staging and neuropsychiatric behavioral symptoms on the likelihood of divorce or separation for older adult married couples. For this case-control study, we used data from the National Alzheimer's Coordinating Center (NACC) Uniform dataset (UDS) versions 2 and 3. This dataset was from 2007 to 2021 and contains standardized clinical information submitted by NIA/NIH Alzheimer's Disease Research Centers (ADRCs) across the United States (US)...

OBJECTIVE: Studies of families' experiences with caregiving to older adults most often focus on overall burden and stress. Yet, caregiving is also a type of relationship, and the onset of caregiving can contribute to relationship strain between care partners. Despite implications for both care partners, little is known about how caregivers cope with caregiving relationship strain. METHODS: The authors conducted nine focus groups and 8 interviews with a purposeful sample of racially and ethnically diverse family caregivers in Los Angeles...