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

Abstract

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.

Does an intervention designed to improve self‐management, social support and awareness of palliative‐care address needs of persons with heart failure, family caregivers and clinicians?

“…This study adds to the growing evidence of the feasibility and acceptability of programs that address care values and preferences and supports the utility of care planning for a variety of partners managing HF and dementia (Orsulic‐Jeras et al., ; Sebern & Woda, ). The iSCIP was acceptable and useful to stakeholders.…”

“…Care tasks can be assigned to identified persons or to categories, such as the caregiver, family and friends, or paid resources. These care preferences are the basis for the care‐planning activity (Orsulic‐Jeras et al., ).…”

The impact of early psychosocial intervention on self‐efficacy of care recipient/carer dyads living with early‐stage dementia—A mixed‐methods study

“…There is an urgent need for useful and effective interventions to reduce the impact of dementia on people with dementia, carers, and society (Orrell et al, 2017). G orska, Forsyth, and Maciver (2018) recommend greater attention is paid to the impact of self-efficacy on adaptation in dementia, to foster a better understanding of how interventions may be enhanced.…”

“…However, dementia dyads are frequently unclear as to the long‐term effects of dementia and the difficulty they experience in accessing information and practical support services is well documented (Górska et al., ; Macleod, Tatangelo, McCabe, & You, ; Peel & Harding, ). Discussions about engaging with care providers outside of the family and the point at which care may no longer be safely provided at home are often put‐off until the later stages of the disease (Orsulic‐Jeras, Whitlatch, Szabo, Shelton, & Johnson, ). At this point families may be forced to make critical decisions in a crisis situation when time and goodwill are often lacking, resulting in unplanned acute hospital admissions and/or premature admission to long‐term care (LTC) for the person with dementia (Dening, King, Jones, & Sampson, ; Orsulic‐Jeras et al., ).…”

The intersection of culture in the provision of dementia care: A systematic review

“…For example, the implementation of interventions such as SHARE (Support, Health, Activities, Resources and Education) is required. SHARE is a programme used in the early stages of dementia to plan for future care with family members, enabling decision making in the later stages of dementia to be inclusive and respectful of the person's wishes (Orsulic‐Jeras, Whitlatch, & Szabo, ).…”