The Support, Health, Activities, Resources, and Education program for early stage dementia: Results from a randomized controlled trial

Whitlatch, Carol J.; Heid, Allison R.; Femia, Elia E.; Orsulic‐Jeras, Silvia; Szabo, Sarah M; Zarit, Steven H.

doi:10.1177/1471301217743033

Cited by 38 publications

(48 citation statements)

References 25 publications

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“…Participants provided ideas for practices ranging from small-scale practice changes that can be implemented by a single provider to large-scale institutional practice changes, such as restructuring clinical encounters. Evaluation of the Support, Health, Activities, Resources, and Education (SHARE) program suggests that both caregivers and persons with early-stage dementia can effectively and meaningfully participate in interventions that include both dyadic and individual sessions (Whitlatch et al, 2019). Like the sessions in SHARE, separate clinical encounters would allow institutional practice changes, such as restructuring clinical encounters, to allow for separate, yet coordinated, interactions for patients and accompanying caregivers.…”

Section: Discussionmentioning

confidence: 99%

Integrating Family Caregivers of People With Alzheimer’s Disease and Dementias into Clinical Appointments: Identifying Potential Best Practices

et al. 2019

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Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer’s disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers ( n = 42), three included non-spousal caregivers ( n = 36), and one included people with MCI ( n = 15). Seven potential best practices were identified, including the following: “acknowledge caregivers’ role and assess unmet needs and capacity to care” and “communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers.” Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.

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Section: Discussionmentioning

confidence: 99%

Integrating Family Caregivers of People With Alzheimer’s Disease and Dementias into Clinical Appointments: Identifying Potential Best Practices

et al. 2019

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“…9,[12][13][14][15][16][17] This body of work has helped move forward dyadic-and in many cases relational-level research, and also has led to ecologically-sound dyadic interventions that honor the way family units navigate, experience and manage chronic illness. [18][19][20][21] Dyadic research is still an emerging science, however, and even when researchers have data on both patients and their care partners, few employ an approach that is truly dyadic. Furthermore, the majority of dyadic research has focused on matched pairs or multivariate outcomes models that simultaneously examine separate outcomes for both members of the dyad controlling for interdependence.…”

Section: The Problem: Dyadic Methods Are Rarely Used In Cardiovasculamentioning

confidence: 99%

Understanding the family care dyad: A comparison of two multilevel models

Lyons

Lee

2020

European Journal of Cardiovascular Nursing

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Although there has been increasing attention on a dyadic perspective of illness, contemporary dyadic research methods are still rarely utilized in cardiovascular disease. The focus of this paper is to describe the advantages of two types of multilevel dyadic models (the matched pairs model and the lesser known incongruence model). Data exemplars in a sample of heart failure family dyads are used to illustrate the distinct advantages of these two related multilevel dyadic models with particular emphasis on alignment with research questions. The more commonly known matched pairs model examines separate outcomes for each member of the dyad, controlling for the interdependent nature of the data. By re-parameterizing this model into a univariate dyadic outcomes model, researchers can address distinct, and sometimes more appropriate, research questions (e.g. incongruent appraisals of the illness experience). This paper promotes greater application of these methods in cardiovascular research to further understanding of the dyadic experience and more appropriately target interventions.

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“…Two studies assessed interventions related to enteral feeding in advanced dementia, a controlled before and after study 37 and a randomized trial 38 . Six studies evaluated interventions related to ACP with either caregivers alone or PLwD‐caregivers dyads; these included one controlled before and after study 39 and five randomized trials 40‐44 . All were undertaken in either the USA, the UK or Belgium.…”

Section: Resultsmentioning

confidence: 99%

“…Only one study focused specifically on participants living with dementia at an early stage, where they were paired with family members in dyads 44 . Other studies included people living with later stages of dementia, also as dyads, 40,41 and one study included only caregivers as participants for those with late‐stage dementia 42 .…”

Section: Resultsmentioning

confidence: 99%

“…The remaining two studies 39,43 detail approaches that could be employed with PLwD, caregivers or both as the course of dementia progressed. A range of evaluation measures were used, including decisional conflict, 42 frequency of relevant discussions 39,43 the quality of communication, 40 levels of SDM, 39,43 the number of palliative care domains discussed, 40‐42 family report of concordance with clinicians on the primary goal of care, 40 decision satisfaction 40,42,44 and dyadic functioning 44 . The variation in outcome measures reflects the variation in study design, the primary outcome measure chosen and the specific features of each intervention.…”

Section: Resultsmentioning

confidence: 99%

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Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions

Geddis-Regan

Errington

Wassall

et al. 2020

Health Expectations

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Background Dementia can have a profound impact on decision making. People living with dementia (PLwD) often need to make decisions about health care, and, as dementia progresses, decisions may need to be made on their behalf. Specific interventions may support this process. Review Question What interventions are effective in improving shared decision making or surrogate decision making on the health care of PLwD? Methods A narrative systematic review of existing literature was conducted. Seven databases, grey literature and key journals were searched. After exclusion by title, abstracts then full texts were reviewed collaboratively to manage any disagreements. Results Eight studies met the inclusion criteria. Two articles, including one RCT, evaluated decision aids regarding the use of enteral feeding in advanced dementia. Six further articles, including five RCTs, were found which evaluated the effectiveness of interventions supporting patients or carers with advance care planning. Conclusion Decision‐making interventions typically consist of multiple components which aim to establish preferences for future health care. Advance care planning interventions supported aspects of the decision‐making processes but their impact on decision quality was rarely evaluated. Interventions did not increase the concordance of decisions with a person's values. The decision‐specific interventions are unlikely to produce benefit in other decision contexts. Patient Involvement Two caregivers, a public stakeholder group and a carer group were consulted in the design of the wider study to which this review relates. Six PLwD refined the research questions addressed in this paper.

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The Support, Health, Activities, Resources, and Education program for early stage dementia: Results from a randomized controlled trial

Abstract: Support, Health, Activities, Resources, and Education Program is a promising prevention approach that takes advantage of the early stage of dementia when both members of the dyad can participate fully in making decisions about later care.

Cited by 38 publications

References 25 publications

Integrating Family Caregivers of People With Alzheimer’s Disease and Dementias into Clinical Appointments: Identifying Potential Best Practices

Integrating Family Caregivers of People With Alzheimer’s Disease and Dementias into Clinical Appointments: Identifying Potential Best Practices

Understanding the family care dyad: A comparison of two multilevel models

Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions

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