By Kaleah McIlwain
For someone living with dementia, performing everyday tasks like managing money, cooking, or driving presents a challenge. This challenge is lessened with the help of caregivers.
Caregivers provide intensive support to persons with dementia which can be a 24/7 responsibility that they take-on in addition to their own obligations. Caregivers can be spouses, children, parents, or friends who are helping someone they care about, often times with little thought to how it impacts their own emotional and physical health.
Caregivers experience symptoms of depression and anxiety and have feelings of anger, sadness, and frustration. Becoming a caregiver is a great responsibility and it is important to remember that caregivers need to take care of themselves in order to be able to take care of others.
This is what prompted the creation of the National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers last year. The goal of the summit was to discuss research related to dementia patients and their caregivers to identify what they know and do not know in order to accelerate the development, evaluation, and implementation of comprehensive care, services, and supports for people with dementia, their families, and caregivers.
The summit set national research recommendations on care and services for people with dementia and their families. The recommendations are the collaborative work from nationally and internationally recognized experts and researchers, and stakeholders from the private and public sector. The purpose of the research recommendations is to help guide stakeholders in their future investments when it comes to the field of care, services, and support for people with dementia and their caregivers.
There were an estimated 700 recommendations made at the summit. The list was then combined, consolidated, and organized into 12 major themes:
- Heterogeneity of Persons Living with Dementia and their Caregivers
- Research Methods to Develop More Effective Dementia Care, Services and Supports
- Caregiver Relationships, Roles, and Networks
- Clinical Approaches and the Lived Experience of Dementia
- Engaging Persons Living with Dementia and Caregivers in Research
- Dementia-Related Terminology, Nomenclature, and Stigma: Words Matter
- Comprehensive Models for Dementia Care, Services, and Supports
- Strategies for Scaling and Disseminating Existing Evidence, Drawing Upon Implementation Science
- Living Places, Physical and Social Environments, and Processes of Care for Persons with Dementia, Including Those who Live Alone
- Financial Burden and Out-of-Pocket Costs to Persons Living with Dementia and their Caregivers
- Ensuring an Adequate and Qualified Workforce to Support Persons with Dementia and their Caregivers
- Technology to Support Persons with Dementia and their Caregivers
The themes were purposely left broad so as to invite more stakeholders to utilize them to fit the context of their individual organizations. Moving forward, the hope is that these recommendations will be used to generate new research projects that represent diverse stakeholder voices.
The next National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers is set for March 2020. Any research projects that come from this past summit will be presented in the next one.
For further details, such as the summit overview, description of themes, and post-summit follow up, click here.