Household Members of Persons with <scp>A</scp>lzheimer's Disease: Health Conditions, Healthcare Resource Use, and Healthcare Costs

Suehs, Brandon T.; Shah, Sonali; Davis, Cralen; Alvir, José; Faison, Warachal; Patel, Nick C.; Amerongen, Derek van; Bobula, Joel

doi:10.1111/jgs.12694

Cited by 36 publications

(53 citation statements)

References 23 publications

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“…Caregiving has been linked to development of mood Condition-specific symptoms at night, e.g., leg cramps or hallucinations in Parkinson's disease and substance use disorders, metabolic syndrome (hypertension, poor glucose regulation, central obesity, and high triglyceride levels), heart disease, arthritis, and chronic back pain [21][22][23]. Household members of persons with dementia have more medical service utilization and greater healthcare costs than those living with persons without dementia [24]. The negative health effects in caregivers appear to be mediated in part by genetically influenced stress-reactivity that in turn is associated with hyperarousal in sleep, depression, and caregiver burden [4 & ], as well as increased risk for caregiver cognitive decline [23].…”

Section: Health and Functional Consequences Of Insomniamentioning

confidence: 99%

Sleep in caregivers

McCurry

Song

Martin

2015

Current Opinion in Psychiatry

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There is a growing literature describing the general determinants of sleep disturbances in caregivers, the health consequences of these disturbances, and intervention strategies for treating them. Identifying effective sleep treatments suited to more specialized caregiving situations and increasing intervention access will help caregivers continue to provide quality care while protecting their own health and well-being.

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Section: Health and Functional Consequences Of Insomniamentioning

confidence: 99%

Sleep in caregivers

McCurry

Song

Martin

2015

Current Opinion in Psychiatry

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“…These mental illnesses include anxiety [6-8], depression [6,9-15], poor sleep quality [7,8], and substance abuse or dependence [16]. Caregiving also affects the work force, with caregivers displaying greater absenteeism [6,7], higher rates of poor physical health [17-19], and higher mortality [20,21].…”

Section: Introductionmentioning

confidence: 99%

Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers

Bateman¹,

Brady²,

Wilkerson³

et al. 2017

JMIR Res Protoc

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BackgroundIn the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers.ObjectiveThe primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants’ social networks. The study’s secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers.MethodsWe recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants’ Facebook News Feed, allowing participants’ Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the friendsourced answers.ResultsIn total, 6 AD caregivers completed the initial online survey and semistructured telephone interview. Of these, 4 AD caregivers agreed to participate in the online Facebook closed group activity portion of the study. Friendsourcing and crowdsourcing answers to caregiver questions had similar rates of acceptability as rated by content experts: 90% (27/30) and 100% (45/45), respectively. Rates of emotional support and informational support for both groups of answers appeared to trend with the type of support emphasized in the caregiver question (emotional vs informational support question). Friendsourced answers included more shared experiences (20/30, 67%) than did crowdsourced answers (4/45, 9%).ConclusionsWe found an asynchronous, online, closed group on Facebook to be generally acceptable as a means to deliver support to caregivers of people with AD. This pilot is too small to make judgments on effectiveness; however, results trended toward an improvement in caregivers’ self-efficacy, sense of support, a...

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“…1 A substantial body of research from community settings has demonstrated that family members of patients with dementia are at increased risk of mood disorders, physical ailments, reduced employment, as well as increased healthcare utilization and mortality. 2,3,4,5,6,7,8 It is now also recognized that although many such family members experience relief upon institutionalization of their loved one, a substantial proportion remain at elevated risk of adverse outcomes due to the unique stresses of the nursing home (NH) environment. 9 Given that up to 90% of patients with dementia will be cared for in a NH, 10 and as many as 70% of Americans with dementia will die in this setting, 11 there is need for measures that capture the distress and burden of families of patients with dementia in this setting.…”

Section: Introductionmentioning

confidence: 99%

Development and Psychometric Properties of the Family Distress in Advanced Dementia Scale

Givens

Jones

Mazor

et al. 2015

Journal of the American Medical Directors Association

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Objective The majority of scales to measure family member distress in dementia are designed for community settings and do not capture the unique burdens of the nursing home (NH) environment. We report the psychometric properties of a new Family Distress in Advanced Dementia Scale for use in the NH setting. Design, Setting, Participants Cross-sectional questionnaire of 130 family member health care proxies of NH residents with advanced dementia in 31 Boston-area NHs. Methods Thirty-one initial items were evaluated, measuring the frequency over the past 3 months of sources of distress. Exploratory factor analysis identified domains of distress; Cronbach’s alpha was computed for each domain. Associations between the domains and other measures were evaluated using Pearson correlation coefficients, including measures of depression (PHQ-9), satisfaction with care (Satisfaction with Care at the End-of-Life in Dementia [SWC-EOLD]) and caregiver burden (Zarit Burden Interview short version). Results Factor analysis suggested three domains: Emotional Distress (9 items), Dementia Preparedness (5 items), and NH Relations (7 items). Cronbach’s alpha coefficients were 0.82, 0.75 and 0.83 respectively. The PHQ-9 correlated most strongly with the Emotional Distress factor (r = 0.34), the SWC-EOWD correlated most strongly with the NH Relations factor (r = 0.35), as did the Zarit Burden Scale (r = 0.50). Conculsions The Family Distress in Advanced Dementia Scale encompasses three domains of distress. This scale represents a much needed tool to assess distress among family members of NH residents with advanced dementia and provides a metric to evaluate interventions in the population.

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Household Members of Persons with Alzheimer's Disease: Health Conditions, Healthcare Resource Use, and Healthcare Costs

Abstract: HHMs of individuals diagnosed with AD demonstrated greater medical condition burden, healthcare resource use, and direct healthcare costs than non-AD HHMs. These findings demonstrate the significant clinical and financial impact of AD on HHMs of individuals with AD.

Cited by 36 publications

References 23 publications

Sleep in caregivers

Sleep in caregivers

Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers

Development and Psychometric Properties of the Family Distress in Advanced Dementia Scale

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