Young Onset Dementia - the Difficult Diagnosis and the Stressful Life for the Whole Family (NCT02055092) | Clinical Trial Compass
CompletedNot Applicable
Young Onset Dementia - the Difficult Diagnosis and the Stressful Life for the Whole Family
Norway250 participantsStarted 2014-02
Plain-language summary
People diagnosed with young onset dementia are today mostly assigned to the same healthcare services as people developing dementia at an older age. They and their families are however in a quite different life situation, which is likely to generate different challenges and specific needs for tailored healthcare services, of importance in maintaining their perceived quality of life.
The investigators of this study wish to assess the factors influencing these families' quality of life, their specific needs and their use of healthcare services by the use a combination of quantitative and qualitative methods. The main aim of this study is to provide better future healthcare services to these families, and to develop a programme for optimal collaboration between specialist healthcare services and the local dementia teams.
Who can participate
Age range
69 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Debut of dementia symptoms before the age of 65 years, but age at time of inclusion may be up to 70 years.
* FTD (Neary et al 1998 criteria)
* Primary progressive aphasia (Mesulam 2003 criteria)
* AD (DSM-IV)
* Community living, excl. dementia-specific living facilities manned 24/7
* Family member with regular contact at least x 1/week.
Exclusion Criteria:
* Lack of informed consent
* No close or appropriate family member
* Frontal lobe dysfunction due to non-progressive injury, i.e. cerebral infarction
* Frontal lobe dysfunction due to motor neuron disease (ALS)
* Other dementia specific condition with frontal lobe dysfunction (Huntington, HIV, Down syndrome, alcoholic dementia)
* Mental retardation
* Current substance abuse, incl. excessive alcohol consumption for the past 12 months
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Quality of life
Timeframe: Baseline
2
Change from baseline in quality of life at 12 months
Timeframe: Baseline, 12 months
3
Change from baseline in quality of life at 24 months