Supporting Dementia Caregivers After Death
Supporting Dementia Caregivers After Death
Project Goal
Our goal is to fill a gap in support for caregivers of persons with dementia after the person with dementia has died. This goal is intentionally broad and will include work to better understand, develop, evaluate, implement, and disseminate technological tools and psychosocial resources to dementia caregivers navigating life after the death of the person with dementia.
Equity
This Community Advisory Board includes members with a range of expertise including those with lived experience, research experience, clinical experience, and community experience. All members are recognized as equals and no member’s viewpoint or expertise is above that of any other. We are all here because we all have something of value to contribute.
Core Beliefs
There is a continuum of loss, happening throughout the caregiving journey, that is essential to understanding post-death experience.
Resources need to be available to help people work through end of life and legacy work before the end comes. These resources might lessen the grief and difficulty both before and after the death of the person who lived with dementia.
There is also a gap in support provided after death.
Support may include grief work, but it also includes a focus on what is next.
Caregiving is often iterative and does not always end with one death.
Transparency
Community-engaged research efforts are sometimes plagued by power imbalances. To reduce this power imbalance, we agree to err on the side of transparency. This transparency includes, but is not limited to, an agreement that all members have the right to access all study materials including grant applications (funded and unfunded), institutional review board materials, meeting recordings and transcripts, and dissemination materials (e.g., manuscripts or community presentations). We also recognize the need for confidentiality to facilitate open and honest exchanges. Therefore, while transparency is the expectation within the board, confidentiality is the expectation when interfacing between the board and the outside world.
Commitment to and Exit from CAB
To foster meaningful engagement and build the rapport that engenders that engagement, we request commitments to CAB-membership lasting 1-3 years. At the end of a given commitment period, members will have a 1:1 meeting with Zach to determine if they would like to make a new commitment to continue CAB membership and how long they would like that commitment to be.
Want More Information?
Would you like more information about joining and/or connecting with the Supporting Dementia Caregivers After Death CAB?