SHARING Choices for Dementia

Phase-Based Estimates
1
Effectiveness
1
Safety
MedStar Medical Group at MedStar Health at Brandywine, Brandywine, MD
Dementia+1 More
SHARING Choices - Behavioral
Eligibility
65+
All Sexes
Eligible conditions
Dementia

Study Summary

This study is evaluating whether a program to help people and families prepare for advance care planning can help people with Alzheimer's disease and related dementias.

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Eligible Conditions

  • Dementia
  • Advance Care Planning

Treatment Effectiveness

Effectiveness Estimate

1 of 3

Study Objectives

This trial is evaluating whether SHARING Choices will improve 1 primary outcome and 1 secondary outcome in patients with Dementia. Measurement will happen over the course of 6 months preceding patient death.

1 year
Proportion of patients 65 and older with documentation of any advance directive in the Electronic Health Record (EHR)
Month 6
Occurrence of potentially burdensome procedures reported within 6 months preceding death

Trial Safety

Safety Estimate

1 of 3

Trial Design

2 Treatment Groups

Control
SHARING Choices

This trial requires 87000 total participants across 2 different treatment groups

This trial involves 2 different treatments. SHARING Choices is the primary treatment being studied. Participants will all receive the same treatment. There is no placebo group. The treatments being tested are not being studied for commercial purposes.

SHARING Choices
Behavioral
Components of SHARING Choices include: A letter from the clinic introducing an initiative to prepare persons and families for Advance Care Planning (ACP); Access to a facilitator trained to lead ACP discussions; Patient-family agenda-setting to align perspectives about the role of family and stimulate discussion about ACP; Facilitated registration to the patient portal (for patient and family) as desired; Education & resources about Alzheimer's Disease and Related Dementias (ADRD) for clinic staff.
ControlNo treatment in the control group

Trial Logistics

Trial Timeline

Approximate Timeline
Screening: ~3 weeks
Treatment: Varies
Reporting: 1 year
This trial has the following approximate timeline: 3 weeks for initial screening, variable treatment timelines, and roughly 1 year for reporting.

Closest Location

MedStar Medical Group at MedStar Health at Brandywine - Brandywine, MD

Eligibility Criteria

This trial is for patients born any sex aged 65 and older. There are 6 eligibility criteria to participate in this trial as listed below.

Mark “yes” if the following statements are true for you:
A primary care practice, defined as adult internal medicine, family medicine, or geriatric medicine;
Have 2 or more practicing clinicians;
Have more than 500 patients aged 65 and over currently receiving care.
Age 65 and older,
Affiliated with Johns Hopkins Community Physicians (JHCP) or MedStar Health;
Established patient of primary care clinician at participating practice (>1 prior visit at the clinic). There will be no formal enrollment of participants into this pragmatic trial as this is a clinic-level initiative that will be available and offered to all eligible patients at clinics randomized to the intervention.

Patient Q&A Section

Please Note: These questions and answers are submitted by anonymous patients, and have not been verified by our internal team.

What causes dementia?

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The causes of dementia remain speculative. The most reasonable theories of dementia are genetic, environmental, and age-related. Aging is associated with a decrease in neurotransmission capacity. This can be caused by a multitude of factors, including chronic degenerative diseases, physical damage, or exposure to toxins. Reduced dopamine release in the basal ganglia and prefrontal cortex may also be involved. Neurotoxic, oxidative, and inflammatory mechanisms may also contribute to Alzheimer's disease. The brain can be damaged by alcoholism, and the immune system may be affected by infection. Inflammation may impair synaptic function by interfering with signal transduction and by causing nerve cell death. Reduced brain connectivity and neuronal death may contribute to dementia.

Unverified Answer

What are common treatments for dementia?

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Cognitive behavioral therapy (CBT) and psychotherapy (PT) seem to be the most common treatment for dementia.\n\n- Drugs: \ne.g. SSRIs for depression, NSAIDS and ACEIs for hypertension\n- Medications: \ne.g. NSAIDs\n\nThere will be a number of different ways to classify different health practitioners, each of which have some advantages and disadvantages. For example, according to the World Health Organization, health professionals are sorted in three categories: health worker, health practitioner, health activist. This categorisation does have its drawbacks; it is subject to change and individual circumstances may have an impact on the classification.

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What are the signs of dementia?

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A lack of ability to make decisions, changing daily life patterns and abnormal cognition are signs of dementia. Cognitive impairment associated with dementia can include changes to personality, memory or judgement, speech problems and vision loss.\n

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How many people get dementia a year in the United States?

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Around 1.9 million people in the Unites States are diagnosed with dementia a year, with an additional 3.8 million more likely to die from its consequences. Over 80% of the burden was incurred by age 65 and over and is expected to increase as the population aged.

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What is dementia?

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As dementia is associated with cognitive deficits, dementia must be taken into account when working with PAs. Some people, despite normal cognition and normal functional assessment, often have clinically significant dementia complaints. They should be assessed for dementia.

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Can dementia be cured?

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The current study suggests that, with early diagnosis and intervention, some patients with dementia-associated psychosis can improve, while others may not. At the group level, no statistically significant changes were determined, although treatment was generally rated very well by treating clinicians. In the absence of strong evidence on the clinical effectiveness of such interventions, the possibility of achieving a complete cure from the condition cannot be ruled out.

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How does sharing choices work?

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If informed and shared choices are an integral part of palliative patient care, it should be the priority for patient and provider satisfaction. Although shared decision making is an important concept, there are many ways one could do so.

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How serious can dementia be?

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Symptoms of dementia are most severe earlier in the course of the disease. In the very last stages of illness many caregivers and patient suffer losses that go much deeper than the physical loss of a loved one. As in all cases of major loss, a grieving process is needed.

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What is the average age someone gets dementia?

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A common misconception is that it is uncommon for older adults to get dementia. This is certainly not true. Dementia is the second most common cause of cognitive decline in older adults after Alzheimer’s disease, and it accounts for up to half of all cognitive changes with age. However, Alzheimer’s disease has a higher prevalence and faster rate of onset than dementia.

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Who should consider clinical trials for dementia?

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Clinical trials should be conducted in a way that is tailored to each patient's specific needs for care and that of caregivers. Trial groups should include a reasonable number of participants, should contain patients and carers who reflect the diversity of the condition, and should take into account patient's views, and their family and carers. The outcome of clinical trials can be shared with patients and carers in a manner that promotes comprehension. The quality of care for an individual with dementia is most closely associated with the quality of participation in a clinical trial.

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What is sharing choices?

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Sharing rights include those which are not just financial investments, but also those which impact the quality of life of the family. It is also important to consider potential for family to suffer from loss of service when financial arrangements are made which is often seen to be unfair.

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Is sharing choices safe for people?

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Given that participants felt limited by their ability to understand complex information, it may prove advantageous to share decision-making skills with people who can communicate adequately and in a way that is appropriate to the people's situation.

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