Young Onset Dementia - the Difficult Diagnosis and the Stressful Life for the Whole Family

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.

Conditions

• Frontotemporal Dementia
• Alzheimer Disease

Sponsors & Collaborators

• The Research Council of Norway

  collaborator OTHER

• The Hospital of Vestfold

  collaborator OTHER

• Oslo University Hospital

  collaborator OTHER

• Sykehuset Innlandet HF

  collaborator OTHER

• Haraldsplass Deaconess Hospital

  collaborator OTHER

• Karolinska University Hospital

  collaborator OTHER

• Copenhagen University Hospital, Denmark

  collaborator OTHER

• Zealand University Hospital

  collaborator OTHER

• Landspitali University Hospital

  collaborator OTHER

• Sykehuset Telemark

  collaborator OTHER_GOV

• Norwegian Centre for Ageing and Health

  lead OTHER

Principal Investigators

• Geir Selbæk, MD, PhD · Norwegian Centre for Ageing and Health

• Hege Kersten, CPh, PhD · Norwegian Centre for Ageing and Health

• Aud Johannessen, DrPH · Norwegian Centre for Ageing and Health

Eligibility

Max Age

69 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2014-02-28

Primary Completion

2017-06-30

Completion

2020-07-31

Countries

• Norway

Study Locations