Home Palliative Care for Dementia
Recruiting in Palo Alto (17 mi)
Overseen byLaura P Gelfman, MD, MPH
Age: 65+
Sex: Any
Travel: May Be Covered
Time Reimbursement: Varies
Trial Phase: Academic
Recruiting
Sponsor: Icahn School of Medicine at Mount Sinai
Disqualifiers: No caregiver, Not in Manhattan, others
No Placebo Group
Approved in 1 Jurisdiction
Trial Summary
What is the purpose of this trial?A multi-site, single-blinded, parallel, randomized-controlled trial to evaluate the effectiveness of a novel model of in-home palliative care for dementia patients and their family caregivers. From inpatient and outpatient settings associated with four hospitals across New York City, patients with advanced dementia and their family caregivers will be randomized to intervention or augmented control.
Will I have to stop taking my current medications?
The trial information does not specify whether you need to stop taking your current medications. It's best to discuss this with the trial coordinators or your doctor.
What data supports the effectiveness of the treatment Home Palliative Care for Dementia?
Research suggests that palliative home care can improve the quality of care and reduce healthcare costs for older people with dementia at the end of life, indicating potential benefits of this treatment.
12345Is home palliative care safe for people with dementia?
The research does not provide specific safety data for home palliative care in dementia, but it suggests that this care model can improve the quality of care and support for patients and their families.
13678How is the Home Palliative Care treatment different from other treatments for dementia?
Home Palliative Care for dementia is unique because it focuses on providing holistic support to both the person with dementia and their family in their own home, addressing not just medical needs but also emotional and social aspects. This approach is different from traditional treatments that may focus more on medication and less on the overall well-being and quality of life of the patient and their family.
19101112Eligibility Criteria
This trial is for patients over 64 years old with advanced dementia (GDS > 6) living in Manhattan, not in long-term care. They must have had a hospital visit within the last year and have a primary physician from one of the four Mount Sinai sites. A family caregiver must be willing to enroll and either patient or caregiver should speak English or Spanish.Inclusion Criteria
I need help with daily activities like dressing or bathing.
Residence in Manhattan where they are currently living (not in a long-term care facility)
I have been hospitalized or visited the ER in the past year.
+6 more
Exclusion Criteria
Does not have a family caregiver to enroll
Does not reside in Manhattan outside of long-term care facility
Does not have fluency in English or Spanish
Trial Timeline
Screening
Participants are screened for eligibility to participate in the trial
2-4 weeks
Intake and Care Plan Development
An intake visit is conducted by the clinical team to develop a care plan based on clinical needs
1 week
1 visit (in-person or virtual)
Ongoing Monitoring and Support
Participants receive ongoing monitoring and support through telephone, video, and in-person visits, with access to a 24-hour advice line
12 months
Weekly IDT meetings, as needed visits
Follow-up
Participants are monitored for healthcare utilization and caregiver outcomes
12 months
Participant Groups
The study tests an innovative home palliative care model for those with advanced dementia. Participants are randomly assigned to receive this new care approach at home or an augmented standard control, comparing outcomes across multiple New York City hospitals.
2Treatment groups
Experimental Treatment
Active Control
Group I: Palliative care at homeExperimental Treatment1 Intervention
Randomized to intervention arm
Group II: Augmented controlActive Control1 Intervention
Randomized to augmented control (visits to the caregiver from a CHW without training in dementia or palliative care)
Home Palliative Care is already approved in United States for the following indications:
🇺🇸 Approved in United States as Home Palliative Care for:
- Symptom management for advanced dementia
- Support for family caregivers
Find a Clinic Near You
Research Locations NearbySelect from list below to view details:
Ichan School of Medicine at Mount SinaiNew York, NY
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Who Is Running the Clinical Trial?
Icahn School of Medicine at Mount SinaiLead Sponsor
National Institute on Aging (NIA)Collaborator
References
Improved quality of care and reduced healthcare costs at the end-of-life among older people with dementia who received palliative home care: A nationwide propensity score-matched decedent cohort study. [2022]While palliative home care is advocated for people with dementia, evidence of its effectiveness is lacking.
Prognostication in Home-Dwelling Patients with Advanced Dementia: The Palliative Support DEMentia Model (PalS-DEM). [2021]Difficulties with prognostication prevent more patients with advanced dementia from receiving timely palliative support. The aim of this study is to develop and validate a prognostic model for 6-month and 1-year mortality in home-dwelling patients with advanced dementia.
Inter-rating reliability of the Swiss easy-read integrated palliative care outcome scale for people with dementia. [2023]The Integrated Palliative Care Outcome Scale for People with Dementia is a promising instrument for nursing home quality improvement and research in dementia care. It enables frontline staff in nursing homes to understand and rate the needs and concerns of people with dementia. We recently adapted the measure to include easy language for users from various educational backgrounds.
Culture in the spotlight-cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study. [2021]Dementia is a life-limiting disease with high symptom burden. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is the first comprehensive person-centered measure to identify and measure palliative care needs of people with dementia. However, such a measure is missing in the German health care system.
A scoping review of the evidence for community-based dementia palliative care services and their related service activities. [2022]Palliative care is identified internationally as a priority for efficacious dementia care. Research into "effective models" of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community.
Modelling the landscape of palliative care for people with dementia: a European mixed methods study. [2023]Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made.To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care.
Inpatients With Dementia Referred for Palliative Care Consultation: A Multicenter Analysis. [2022]Specialty palliative care (PC) may benefit patients with dementia by aligning treatment with goals and relieving symptoms. We aimed to compare demographics and processes and outcomes of PC for inpatients with dementia with those with systemic illnesses or cancer.
The challenge pathway: A mixed methods evaluation of an innovative care model for the palliative and end-of-life care of people with dementia (Innovative practice). [2022]An innovative service for the palliative and end-of-life care of people with dementia was introduced at a UK hospice. This evaluation involved analysis of audit data, semi-structured interviews with project staff (n=3) and surveys of family carers (n=15) and professionals (n=20). The service has increased access to palliative, end-of-life care and other services. Improvements were reported in the knowledge, confidence and care skills of family carers and professionals. Carers felt better supported and it was perceived that the service enabled more patients to be cared for at home or in their usual place of care.
A comparison of four dementia palliative care services using the RE-AIM framework. [2023]Living with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned.
The challenges of providing palliative care for older people with dementia. [2021]Palliative care seems the right approach to dementia, except that it suggests a dichotomy between cure and care. As in cancer care, supportive care provides a broader framework, viewing dementia from the time of diagnosis until death and bereavement. The challenge is to find the right approach to the individual. This challenge arises in the person's own home, in long-term care homes, and in hospitals. The challenging features of palliative care for older people with dementia are found in connection with the use of antibiotics, antipsychotics, and other medications, as well as in decisions about whether the person is in pain or in distress, or whether artificial feeding should be contemplated or not, as well as about the use of advance care plans. In short, the challenges are essentially ethical as well as clinical. The right approach will be the one that recognizes this facet of clinical care.
A palliative approach to care of residents with dementia. [2019]Dementia is a progressive, life-limiting illness. People with the condition who move into a care home deserve palliative care. This article discusses an interprofessional pilot workshop for direct care providers held in a care home in British Columbia, Canada. The workshop aimed to incorporate a palliative approach into dementia care for residents. Workshop development, teaching strategies, evaluation and outcomes are shared. The four-hour workshop was structured to promote critical reflection and challenge participants to consider that people with dementia and their families need palliative care much earlier than during the last days of life. Commitment to change statements gathered as part of the workshop indicated that participation increased knowledge, skill and confidence to incorporate a palliative approach into care for people with advanced dementia and their families.
Palliative care for people with dementia living at home: A systematic review of interventions. [2021]The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home.