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Dementia care: the hidden struggles of extended family caregivers revealed

NCT ID NCT04863859

Knowledge-focused Sponsor: Karen Roberto Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This completed study looked at the experiences of 275 extended family members (like grandchildren, siblings, and nieces/nephews) who care for a person with dementia. Researchers interviewed caregivers about their daily tasks, stress, and use of support services. The goal is to use these findings to improve services and reduce caregiver burden.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could help improve services and support for dementia caregivers, reducing their stress and improving quality of life for both caregivers and patients.
What could go wrong
This is an observational study, not a treatment trial. It cannot directly cure or treat dementia. Results may not apply to all caregivers or regions.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

275 people

The number who actually took part.

Started

Sep 2021

Finished

May 2026

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

The study population includes extended family caregivers defined as grandchildren, siblings, nieces/nephews and step-kin of persons living with dementia. Caregivers must be as least 18 years of age and primarily responsible for the hands-on care and/or overall management of care for a person living with dementia living in the community. The study will recruit 60 grandchildren, 60 siblings, 60 nieces/nephews and 60 step-kin care givers; in additional 60 adult child and 60 spouse caregivers will be recruited for comparison purposes.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Speaks/reads English * Resident of Virginia, North Carolina, Maryland, West Virginia, Tennessee, Kentucky or Washington, D.C. * Age 18+ * Is either the grandchild, sibling, niece/nephew, step-kin, adult child or spouse of the person living with dementia * Is providing hands-on care and/or overall management of care for a person living with dementia in the community * Caregiver co-resides with the person with dementia or has face-to-face contact with the person with dementia at least 3 days/week * Has no difficulty talking/hearing on the telephone Exclusion Criteria: * Caregiver of persons with mild cognitive impairment * Person with dementia lives in service-enriched housing such as a continuing care community, or residential facilities, such as assisted living facilities or nursing homes

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Conditions

The condition(s) this trial relates to.

Alzheimer disease dementia neurodegenerative disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Dementia Dementia alzheimers Dementia of Alzheimer type Dementia severe Neuro-degenerative disease

Contacts and locations

Locations

  • Virginia Polytechnic Institute and State University

    Blacksburg, Virginia, 24061, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.