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This is a 12 month study to test the use of a new instrument that measures meaningful outcomes from the caregiver’s assessment of the patient’s well being, and caregiver burden; including:
- Instrument administration feasibility in-person or by telephone
- Measurement and psychometric properties of the instrument
Who is eligible to participate?
- People who have a caregiver who knows their routine and interacts with you face-to-face at least 2 hours per week
- People diagnosed with mild, moderate or severe dementia who are at least age 50 at the time of enrollment
People with dementia who live in a community setting (including Assisted Living)
- People with dementia whose medication treatment includes either monotherapy (cholinesterase inhibitors) or combination therapy (Namenda)
- The monotherapy with a cholinesterase inhibitor must be for between 2 months to 5 years; OR
- Continuous combination therapy (cholinesterase inhibitor and Namenda) must be for a minimum of 2 months and a maximum of 5 years
Note: People actively involved in a treatment trial are not eligible
What types of visits are involved?
You will be asked to answer questionnaires. Visits are at 3 month intervals and include either 3 or 5 in-person visits; and, 3 to 5 phone interviews.
Participants will be asked to:
- Consent to sharing information about their medical history and utilization of healthcare resources
- Agree to participate in in-person study visits and phone interviews with the site staff every 3 months for the length of the study
- Respond to Gold Standard and the new data instrument questionnaires
What are the benefits of participating?
- Study participation will help create meaningful tools to assess caregiver burden and whether this information can be collected meaningfully by telephone versus in-person
- Compensation includes 25 per in-person visit up to $125 for every five in-person visits
- Parking is covered
Where is the study taking place?
This study is taking place at the Alzheimer’s Disease Center at Boston University. The group you are placed in determines how many in-person visits are necessary. And you may be eligible to be interviewed in your home. Parking is available in the Doctor’s Office Building garage, but if required we may be able to reimburse you for alternate transportation.
How can I find out more?
If you are interested in participating in this study, please contact Silvia Serrano at 617-414-1078 or sserrano@bu.edu.
Key Personnel
Robert Stern, PhD
Carol Rossi, RN, BSN, Study Coordinator (617.414.1198)
Stephanie Sikora, MA, ADC Recruitment Coordinator (617.414.1078)
Pallavi Joshi, Study Assistant Coordinator (617.414.8386)
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