caregiver holding hands with older adult

We are researchers, medical providers, and caregivers who are trying to improve care for people with memory problems (like dementia) and their caregivers.  

We want to hear perspectives from former caregivers, people who provide hospice and palliative care services, and other types of experts.  

You will be paid for your time. 

Your insight may help improve end-of-life care for others.  

To Learn More About Participating

 

Family Member or Caregiver? 

Click here to learn more

 

Hospice or Palliative Care Professional?

Click here to learn more

 

 

Organization that Provides Hospice and Palliative Care Services?

Click here to learn more

 

More Information for Family Member or Caregiver

 

Why does this study need my help? 

We want to improve end-of-life care for people with dementia and their caregivers. Lessons from this study will be used to make recommendations to change hospice practice and policy. 

Is this study for me? 

You may be eligible for this study if:

  • You were a caregiver of a family member or friend that had dementia
  • You were 18 or older when the person you cared for passed away
  • You are African American or Black, Asian American and/or Pacific Islander, Latino/a, or multiracial
  • You live in the U.S.
  • Prior experience with hospice is NOT required
What will happen if I participate in this study?

First, you will fill out questions online to see if you can be in the study.

If you move to the next step, you will answer more survey questions online. This will take 10 minutes.

Then, some people will be chosen to do up to three 1-hour interviews about their experience as a caregiver, and their advice about how to improve hospice care and end-of-life care for their communities.

Not all individuals will be invited to participate. Individuals are considered enrolled in the study only at the time of the interview. Completing the interviews will take 2-3 months. Interviews may be scheduled by the study team up to six months after the initial interest form.

Will I be paid for being in this study? 

You will be paid with a small gift card for the online survey.

For the people chosen for the interviews, you will be paid with a larger gift card for each interview (up to three interviews total).

Will it cost me anything to be in the study?

There is no cost for you.

 

 

More Information for Hospice & Palliative Care Professionals 

 

Why does this study need my help? 

We want to improve end-of-life care for people with dementia and their caregivers. Lessons from this study will be used to make recommendations to change hospice practice and policy. 

Is this study for me? 

You may be eligible for this study if:

  • You provide palliative or end-of-life care to people with dementia or their families (e.g., nurse, social worker, chaplain, home health aide, physician, occupational or physical therapist, pharmacist, etc. in an organization that provides hospice services).
  • You live and work in the U.S. 
What will happen if I participate in this study?

First, you will fill out questions online to see if you can be in the study.  We may reach out to set up a time to speak with you by videoconference to clarify your eligibility, answer your questions, and potentially schedule an interview. 

During the interview, we may ask you questions about: 

  • Your professional role
  • Your professional perspectives on care of people with dementia in your organization
  • Recommendations on how to improve care for people impacted by dementia in the future 

We may ask you to share documents from your organization specific to dementia care (e.g., brochures or pamphlets).

Will I be paid for being in this research study? 

You will be paid with a gift card after the interview. 

Will it cost me anything to be in the study?

There is no cost for you.

 

 

More Information for Organizations Providing Hospice Services 

 

Why does this study need my help? 

We want to improve end-of-life care for people with dementia and their caregivers. Lessons from this study will be used to make recommendations to change hospice practice and policy. 

Is this study for me? 

Your organization may be eligible for this study if: 

  • You provide hospice services to people with dementia and their families
  • You are based and provide services in the U.S. 
What will happen if I participate in this study?
  • We will schedule a convenient time for study team members to visit your organization for 2-4 days to learn more about how things work.  
  • Study team members will observe meetings, either in-person or by videoconference 
  • We will ask someone knowledgeable in your organization to complete a survey about the organization and its practices 
  • We will ask for copies or photographs of materials (such as brochures or pamphlets) related to care of people with dementia  
  • We will invite staff, clinicians, and volunteers to participate in interviews  
  • We will ask you to advertise other parts of the study to former caregivers of people with dementia (e.g. through bereavement services).  
Will I be paid for being in this research study? 

Your organization will receive $1,000.  

Will it cost me anything to be in the study?

There is no cost for you.