Objective
Because of the expected increase in the number of dementia patients, the unlikelihood of a cure in the near future, and the rising cost of care, there is an increasing need for effective caregiver interventions. Internet interventions hold considerable promise for meeting the educational and support needs of informal dementia caregivers at reduced costs. The current study aims to provide an overview of the evidence for the effectiveness, feasibility, and quality of Internet interventions for informal caregivers of people with dementia.

Methods
A systematic literature search of five scientific databases was performed, covering literature published up to 10 January 2013. Twelve studies were identified. The quality of the included studies was assessed according to the Cochrane level of evidence and the criteria list of the Cochrane Back Review Group.

Results
The intervention types, dosage, and duration differed widely, as did the methodological quality of the included studies. The overall level of evidence was low. However, the results demonstrate that Internet interventions for informal dementia caregivers can improve various aspects of caregiver well-being, for example, confidence, depression, and self-efficacy, provided they comprise multiple components and are tailored to the individual. Furthermore, caregivers could benefit from interaction with a coach and other caregivers.

Conclusions
Internet interventions for informal dementia caregivers may improve caregiver well-being. However, the available supporting evidence lacks methodological quality. More randomized controlled studies assessing interventions performed according to protocol are needed to give stronger statements about the effects of supportive Internet interventions and their most promising elements. Copyright © 2013 John Wiley & Sons, Ltd.

A systematic review of Internet-based supportive interventions for caregivers of patients with dementia.

Objectives
To determine the prevalence and correlates of unmet needs in a sample of community-residing persons with dementia (PWD) and their informal caregivers.

Design
Analysis of cross-sectional, baseline participant characteristics before randomization in a care coordination intervention trial.

Setting
Baltimore, Maryland.

Participants
Community-residing PWD (n = 254) and their informal caregivers (n = 246).

Measurements
In-home assessments of dementia-related needs based on the Johns Hopkins Dementia Care Needs Assessment. Bivariate and multivariate regression analyses were conducted to identify demographic, socioeconomic, clinical, functional, and quality-of-life correlates of unmet needs.

Results
The mean number of unmet needs was 7.7 ± 4.8 in PWD and 4.6 ± 2.3 in caregivers, with almost all PWD (99%) and caregivers (97%) having one or more unmet needs. Unmet needs in PWD were significantly greater in those with higher cognitive function. Ninety percent of PWD had unmet safety needs, more than half had unmet needs for meaningful activities, and almost one-third had not received a prior evaluation or diagnosis. Higher unmet needs in PWD was significantly associated with nonwhite race, lower income, less impairment in activities of daily living, and more symptoms of depression. For caregivers, more than 85% had unmet needs for resource referrals and caregiver education. Higher unmet caregiver needs was significantly associated with nonwhite race, less education, and more symptoms of depression.

Conclusion
Many community-residing PWD and their caregivers have unmet dementia-related needs for care, services, and support. Providers should be aware that unmet needs may be higher in minority and low-income community residents, caregivers with lower education, and individuals with early-stage dementia. Identifying and treating symptoms of depression in PWD and caregivers may enable them to address their other unmet needs.

/pdf/unmet-needs-of-community-residing-persons-with-dementia-and-33cpgy9xar.pdf

Unmet Needs of Community‐Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study

BackgroundMajor depression (MD) is a risk factor for cardiovascular disease. Reduced heart rate variability (HRV) has been observed in MD. Given the predictive value of HRV for cardiovascular health, reduced HRV might be one physiological factor that mediates this association.MethodsThe purpose of this study was to provide up-to-date random-effects meta-analyses of studies which compare resting-state measures of HRV between unmedicated adults with MD and controls. Database search considered English and German literature to July 2018.ResultsA total of 21 studies including 2250 patients and 1982 controls were extracted. Significant differences between patients and controls were found for (i) frequency domains such as HF-HRV [Hedges' g = −0.318; 95% CI (−0.388 to −0.247)], LF-HRV (Hedges' g = −0.195; 95% CI (−0.332 to −0.059)], LF/HF-HRV (Hedges' g = 0.195; 95% CI (0.086–0.303)] and VLF-HRV (Hedges' g = −0.096; 95% CI (−0.179 to −0.013)), and for (ii) time-domains such as IBI (Hedges' g = −0.163; 95% CI (−0.304 to −0.022)], RMSSD (Hedges' g = −0.462; 95% CI (−0.612 to −0.312)] and SDNN (Hedges' g = −0.266; 95% CI (−0.431 to −0.100)].ConclusionsOur findings demonstrate that all HRV-measures were lower in MD than in healthy controls and thus strengthens evidence for lower HRV as a potential cardiovascular risk factor in these patients.

A meta-analysis of heart rate variability in major depression.

Families play an important role meeting the care needs of individuals who require assistance due to illness and/or disability. Yet, without adequate support their own health and wellbeing can be compromised. The literature highlights the need for a move to family-centered care to improve the well-being of those with illness and/or disability and their family caregivers. The objective of this paper was to explore existing models of family-centered care to determine the key components of existing models and to identify gaps in the literature. A scoping review guided by Arksey & O’Malley (2005) examined family-centered care models for diverse illness and age populations. We searched MEDLINE, PsycINFO, CINAHL and EMBASE for research published between 1990 to August 1, 2018. Articles describing the development of a family-centered model in any patient population and/or healthcare field or on the development and evaluation of a family-centered service delivery intervention were included. The search identified 14,393 papers of which 55 met our criteria and were included. Family-centered care models are most commonly available for pediatric patient populations (n = 40). Across all family-centered care models, the consistent goal is to develop and implement patient care plans within the context of families. Key components to facilitate family-centered care include: 1) collaboration between family members and health care providers, 2) consideration of family contexts, 3) policies and procedures, and 4) patient, family, and health care professional education. Some of these aspects are universal and some of these are illness specific. The review identified core aspects of family-centred care models (e.g., development of a care plan in the context of families) that can be applied to all populations and care contexts and some aspects that are illness specific (e.g., illness-specific education). This review identified areas in need of further research specifically related to the relationship between care plan decision making and privacy over medical records within models of family centred care. Few studies have evaluated the impact of the various models on patient, family, or health system outcomes. Findings can inform movement towards a universal model of family-centered care for all populations and care contexts.

/pdf/towards-a-universal-model-of-family-centered-care-a-scoping-wd3w3x48ff.pdf

Towards a universal model of family centered care: a scoping review.

Despite evidence of ethnic differences in family caregivers' experiences, the extent to which caregiver interventions are culturally tailored to address these differences is unknown. A systematic review of literature published from 1980 to 2009 identified: differences in caregiving experiences of African American, Latino, and Chinese American caregivers; psychosocial support interventions in these groups; and cultural tailoring of interventions. Ethnic differences in caregiving occurred at multiple levels (intrapersonal, interpersonal, environmental) and in multiple domains (psychosocial health, life satisfaction, caregiving appraisals, spirituality, coping, self-efficacy, physical functioning, social support, filial responsibility, familism, views toward elders, use of formal services and health care). Only 18 of 47 intervention articles reported outcomes by caregiver ethnicity. Only 11 reported cultural tailoring; 8 were from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) initiative. Cultural tailoring addressed familism, language, literacy, protecting elders, and logistical barriers. Results suggest that more caregiver intervention studies evaluating systematically the benefits of cultural tailoring are needed.

/pdf/reviews-developing-culturally-sensitive-dementia-caregiver-39nbavu0sg.pdf

Reviews: Developing Culturally Sensitive Dementia Caregiver Interventions: Are We There Yet?

Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.

Marika Donkin

Papers

Family caregivers of people with dementia