A post-diagnosis information and support programme for dyads-People living with dementia or mild cognitive impairment and family carers: A feasibility study.

AIM: The aim of the study was to establish the feasibility of delivering a structured post-diagnosis information and support program to dyads (persons living with dementia or mild cognitive impairment and family carers) in two primary care settings. DESIGN: A two-phase explanatory mixed-method approach guided by the Bowen Feasibility Framework focused on acceptability, implementation, adaptation, integration and efficacy of a five-part programme. In phase 1, the quantitative impact of the programme on the dyadic programme recipients' self-efficacy, quality of life, dyadic relationship and volume of care was measured. In phase 2, inductive content analysis focused on nurse and dyad participant experiences of the programme. Quantitative and qualitative data were reviewed to conclude each element of feasibility. METHODS: Four registered nurses working within the participating sites were recruited, trained as programme facilitators and supported to deliver the programme. Eligible dyads attending the respective primary health clinics were invited to participate in the programme and complete surveys at three time points: recruitment, post-programme and 3-month follow-up. Post-programme semi-structured interviews were conducted with dyads and programme facilitators. RESULTS: Twenty-nine dyads completed the program; the majority were spousal dyads. The programme proved acceptable to the dyads with high retention and completion rates. Implementation and integration of the programme into usual practice were attributed to the motivation and capacity of the nurses as programme facilitators. Regarding programme efficacy, most dyads reported they were better prepared for the future and shared the plans they developed during the programme with family members. CONCLUSION: Implementing a structured information and support programme is feasible, but sustainability requires further adaptation or increased staff resources to maintain programme fidelity. Future research should consider selecting efficacy measures sensitive to the unique needs of people living with dementia and increasing follow-up time to 6 months. IMPACT: This study established the feasibility of registered nurses delivering a post-diagnosis information and support programme for people living with early-stage dementia or mild cognitive impairment and their informal carers in primary care settings. The motivation and capacity of nurses working as programme facilitators ensured the integration of the programme into usual work, but this was not considered sustainable over time. Family carer dyads reported tangible outcomes and gained confidence in sharing their diagnosis with family and friends and asking for assistance. Findings from this study can be used to provide direction for a clinical trial investigating the effectiveness of the structured information and support programme in the primary care setting. REPORTING METHOD: The authors have adhered to the EQUATOR STROBE Statement. PATIENT OR PUBLIC CONTRIBUTION: A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation.

Challenges to and strategies for recruiting chronic care dyads into intervention research.

OBJECTIVES: Recruiting and enrolling appropriate participants into research trials for chronic illness populations can be challenging and time intensive. Successful recruitment requires a variety of strategies that may change as the study progresses. This paper reports on the challenges of and actions taken for recruiting and enrolling into research families living with chronic illnesses. METHODS: We draw on our experiences from over 20 years of research enrolling older adults and their family caregivers (care dyads) into psychosocial research trials. Barriers and actions taken to challenges of recruiting care dyads are presented that can help future investigators meet their recruitment goals in a timely and efficient manner. RESULTS: Despite efforts of an Advisory Committee, numerous community partnerships, and other attempts to boost enrollment, our recruitment goals were not met. Barriers to meeting these goals are described (e.g. partner site staff turnover, lack of site "champion") and potential actions taken. DISCUSSION: This paper examines the challenges experienced recruiting appropriate chronic illness dyads into a psychosocial intervention as well as the various recruitment strategies that were used in an attempt to reach recruitment goals.

A dyadic perspective on assessment in Alzheimer's dementia: Supporting both care partners across the disease continuum.

Written from a dyadic strength-based perspective, this article first provides a brief overview of the Education, Information, and Support section of the 2018 Alzheimer's Disease Dementia Care Practice Recommendations.1 Subsequent sections present a comprehensive overview of available valid and reliable psychosocial measures that assess a selection of important domains for dementia care planning that can be used by families from early stage until end-of-life. Measures selected for the purposes of this article will focus on concepts that are strength-based and most relevant to care dyads as they navigate the difficult disease trajectory: readiness, knowledge, coping, dyadic relationship, care values and preferences. We will also highlight measures that have traditionally targeted the family care partner but can potentially be considered for use with the care partner with dementia, with adjustments, beyond the early stages. Part of this discussion will include various strategies for including persons with dementia in all aspects of their own care using a strength-based perspective, potentially enabling them to answer questions more reliably across disease stages. Last, gaps in existing measures will be identified to provide options to better assess areas of need most meaningful to families, and in ways that positively contribute to the successful aging of those living with dementia and their care partners.

The SHARE program for dementia: Implementation of an early-stage dyadic care-planning intervention.

This article describes the implementation of SHARE (Support, Health, Activities, Resources, and Education), a counseling-based care-planning intervention for persons living with early-stage dementia and their family caregivers (CGs). The foundation of SHARE is built upon assessing and documenting the person living with dementia's care values and preferences for future care. Using the SHARE approach, CGs are given an opportunity to achieve an understanding of their loved one's desires before the onset of disease progression when the demand for making care decisions is high. Through working together with a SHARE Counselor, the care dyad begins to identify other sources of support, such as family and friends and service providers, in order to build a more balanced and realistic plan of care for the future. Data were collected from 40 early-stage dementia care dyads to determine the acceptability of having structured discussions about future care in the early stages of dementia. Findings from this study demonstrate the importance of planning in the early stages when persons with dementia can voice their care values and preferences for future care. Finally, this paper illustrates the use of supportive strategies such as rapport building, establishing buy-in, and communication to initiate care-related discussions with care dyads in the early stages that will help lead to more effective decision making in the future.

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. Next, we describe the variety of services and program models targeted to the needs of individuals living with Alzheimer's disease or other types of dementia and their families. Results: These programs can help ensure that person- and family-centered care is maintained from time of first symptoms through end-of-life. Discussion and Implications: We end with our recommendations for maintaining person- and family-centered care through the provision of targeted information, education, and support to individuals and their families.

Does it Matter if We Disagree? The Impact of Incongruent Care Preferences on Persons with Dementia and Their Care Partners.

Purpose: To gain a better understanding of how actual and perceived incongruence of care preferences affects the psychosocial well-being of persons with dementia and their family caregiver. Design and Methods: In-depth interviews were conducted with 128 dyads each consisting of a person with dementia and a family caregiver. Baseline data from an intervention study were used to examine the relationship between the caregiver's care-related preferences, the person with dementia's care-related preferences, and the caregiver's perception of the person with dementia's preferences. Preferences for three care-related domains were recorded: personal activities of daily living (PADLs), instrumental activities of daily living (IADLs), and socioemotional issues. Primary outcomes included dyadic relationship strain, quality of life, and mood for both the caregiver and person with dementia. Results: Perceived incongruence of care preferences was a better predictor of negative psychosocial outcomes than actual incongruence. Actual incongruence for socioemotional care preferences was a predictor of greater relationship strain and worse mood for the person with dementia, whereas perceived incongruence for socioemotional care preferences was related to lower quality of life and worse mood for the caregiver. Interestingly, perceived incongruence for PADLs predicted higher quality of life and better mood for the caregiver. Implications: Findings have implications for communication between care partners, especially regarding socioemotional care preferences. Socioemotional preferences, which might be overlooked in the creation of a care plan, may influence the person with dementia's well-being.

Recruitment challenges and strategies: Lessons learned from an early-stage dyadic intervention (innovative practice).

An increasing number of family caregivers are seeking services and support due in large part to the dramatic increase in the number of older adults obtaining dementia diagnoses. This paper describes barriers and challenges experienced by our research team in recruiting early-stage dementia caregiving dyads into research studies. Effective recruitment and screening strategies to address these barriers are also discussed. Recruitment and enrollment success depends on these strategies as well as having well-trained recruitment staff who are knowledgeable about the study and have experience working with older adults, and more specifically, persons with dementia.

Acceptability and feasibility results of a strength-based skills training program for dementia caregiving dyads.

PURPOSE: The current article provides an in-depth description of a dyadic intervention for individuals with dementia and their family caregivers. Using a strength-based approach, caregiving dyads received skills training across 5 key areas: (a) education regarding dementia and memory loss, (b) effective communication, (c) managing memory loss, (d) staying active, and (e) recognizing emotions and behaviors. Results of the acceptability and feasibility of the intervention protocols are also presented. DESIGN AND METHODS: Caregiving dyads were randomly assigned to participate in the intervention. Participants in the treatment condition were asked to complete a series of evaluation questions after each intervention session and an overall evaluation of the program. Data were also collected from the intervention specialists who implemented the protocols. RESULTS: Overall, the evaluation data indicated that the content and process of the intervention were viewed as highly acceptable and feasible by both participants and intervention specialists. IMPLICATIONS: This article highlights the merit of using a strength-based approach for working with caregiving dyads with dementia and how a single intervention protocol can be used to address the goals of both care partners. Furthermore, the intervention program was found to be highly acceptable and feasible, which is an important aspect of developing dyadic protocols.