Understanding and Improving Care for Dementia
Research Overview
One of the central research domains of the Harrison Network aims to mitigate suffering associated with dementia. An array of qualitative and quantitative studies were carried out to understand needs, support gaps, and identify opportunities to enhance care for individuals with dementia and their care partners. We aim to use these insights to inform interventions that align with Stages 0 and 1 of the NIH Stage Model for Behavioral Intervention Development.
Team and Funding
This initiative was undertaken by a transdisciplinary team and received generous support from the Global Brain Health Institute, Alzheimer Association, and through career development awards from UCSF, NIH/NIA, and the National Palliative Care Research Center.
Research Impact
Our work aims to enhance the care provided to dementia patients in various care settings and throughout all stages of the condition. Our findings have led us to be able to create our Recommendations for Gerineuropalliative Dementia Care across the Disease Continuum:
Shown are recommendations for gerineuropalliative dementia care, based on synthesized qualitative and quantitative research. Most persons living with dementia will need items listed in the “early disease” box addressed before those in the “moderate-to-severe disease” box, but tasks such as assessing goals and priorities will continue to be relevant at all stages. ACP denotes advance care planning, CP care partner, PCP primary care provider, and PLWD person living with dementia.
Key Publications
A sample of our publications within the Dementia research domain is categorized into focus areas:
Interviews with Patients and Care Partners
- Harrison KL, Garrett SB, et al. "I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care."
- Shafir A, Ritchie CS, et al. "Captive by the Uncertainty"-Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic."
- Radcliffe KG, Halim M, Ritchie CS, et al. “Care Setting Transitions for People With Dementia: Qualitative Perspectives of Current and Former Care Partners."
- Allison TA, Gubner JM, et al. “Meaningful Activities and Sources of Meaning for Community-Dwelling People Living with Dementia."
Interviews with Care Partners of Rapidly Progressive Dementias
- Harrison KL, Garrett SB, Gilissen J, et al. “Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease."
- Sideman AB, Gilissen J, et al. “Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia."
Interviews with Clinicians:
- Bernstein Sideman A, Harrison KL, et al. “Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: Specialty memory care provider perspectives."
- Harrison KL, Allison TA, et al. “Hospice Staff Perspectives on Caring for People with Dementia: A Multisite, Multistakeholder Study."
Chart Reviews and Registry Data Analyses
- Naasan G, Boyd ND, et al. “Advance Directive and POLST Documentation in Decedents With Dementia at a Memory Care Center: The Importance of Early Advance Care Planning."
- Boyd ND, Naasan G, et al. “ Characteristics of people with dementia lost to follow-up from a dementia care center.”
- Harrison KL, Bull JH, et al. “Community-Based Palliative Care Consultations: Comparing Dementia to Nondementia Serious Illnesses."
Community-dwelling Persons with Dementia, using Nationally Representative Survey Data Analyses
- Harrison KL, Ritchie CS, et al. “Care Settings and Clinical Characteristics of Older Adults with Moderately Severe Dementia."
- Harrison KL, Ritchie, CS, et al. “Life expectancy for community-dwelling persons with dementia and severe disability."
- Ornstein KA, Ankuda CK, et al. “Medicare-funded home-based clinical care for community-dwelling persons with dementia: An essential healthcare delivery mechanism."
- Li J, Bancroft H, et al. “Out-of-Pocket Expenses for Long-Term Care by Dementia Status and Residential Setting among US Older Adults."
Hospice Care Insights using Nationally Representative Survey Data Analyses
- Harrison KL, Cenzer I, et al. “ Functional and clinical needs of older hospice enrollees with coexisting dementia."
- Harrison KL, Cenzer I, et al. “Hospice Improves Care Quality For Older Adults With Dementia In Their Last Month Of Life."
Thought Pieces on Care Systems and Policies
- Harrison KL, Hunt LJ, et al. “Dying With Dementia: Underrecognized and Stigmatized.”
- Harrison KL. “The Hidden Curriculum Of Hospice: Die Fast, Not Slow."
- Hunt LJ, Harrison KL. “Live discharge from hospice for people living with dementia isn't "graduating"-It's getting expelled."
- Hunt LJ, Harrison KL. et al. “Instead of wasting money on aducanumab, pay for programs proven to help people living with dementia."
Interventions for Quality of Life and Care
- Possin KL, Merrilees JJ, et al. “ Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use: The Care Ecosystem Randomized Clinical Trial."
- Guterman EL, Kiekhofer RE, et al. “Care Ecosystem Collaborative Model and Health Care Costs in Medicare Beneficiaries With Dementia: A Secondary Analysis of a Randomized Clinical Trial."
- Bernstein A, Harrison KL, et al. “ The Role of Care Navigators Working with People with Dementia and Their Caregivers.”
- Rosa TD, Possin KL, et al. “Variations in Costs of a Collaborative Care Model for Dementia."
- Bernstein A, Merrilees J, et al. “Using care navigation to address caregiver burden in dementia: A qualitative case study analysis."