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

A Nordic Multicentre Observational Study of Persons With Young Onset Dementia and Their Families - Factors Influencing Quality of Life, Theirs Specific Needs and the Use of Healthcare Resources

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.

Background: Most common dementia cases in Young Onset dementia (YOD) are Alzheimer's disease (AD) and frontotemporal dementia (FTD). There is little knowledge about the impact on the affected families, especially with regard to FTD. Although their life situation and specific needs differ from that of older people, they are referred to the same healthcare services.

Hypothesis:

1. QoL is poorer among persons with FTD and their families compared to AD at baseline.
2. There is less worsening of QoL after two years in persons with AD and their families compared to FTD.
3. People with YOD have different needs for health care services than older people with dementia.
4. YOD and their families have more unmet needs than older people with dementia.

Methods: Nordic multicenter observational cohort study of YOD-AD and YOD-FTD. 75 persons in each group, living at home with their families, recruited from five Norwegian and four Nordic memory clinics. The control group consists of 100 older people with dementia age ≥70 years. The investigators use a combination of quantitative and qualitative methods.

The follow-up period of the persons with YOD and their family members is two years. Assessments are made at baseline, 12 and 24 months, with telephone check-ups at 6 and 18 months. The main assessment questionnaires are Quality of life in Alzheimer's disease (QoL-AD), Camberwell Assessment of Need in the Elderly (CANE), and Resource Utilization in Dementia Lite (RUD Lite).

Study aims for the quantitative part of the study:

1. To evaluate the quality of life of persons with YOD and their family members.
2. To identify and explore the specific needs of YOD and their families.
3. To assess the use of health resources and calculate the costs associated with care for YOD, in comparison with older persons with dementia.
4. To compare the functional characteristics of YOD with older people with dementia in terms of cognitive decline, impairment of activities of daily living, changes in behavior, and quality of life.

Study aims and methods for the qualitative part of the study:

1. To investigate how people living alone with young-onset dementia cope with everyday life and decision-making. A longitudinal study with qualitative interviews at 6, 12, 24, 36 and 48 months after initial diagnosis
2. To investigate how it is to be a spouse/cohabitation to a person with young-onset of frontotemporal dementia. A retrospective and prospective study with qualitative interviews.
3. To investigate adult children's experiences with the support they received after their parent with young-onset dementia received a dementia diagnose. A retrospective and prospective study with qualitative interviews.
4. To investigate carers of people with young-onset dementia experiences with the support contact service. A longitudinell study study with qualitative interviews.

Results: Inclusion starts Feb 2014. The objective of this study is to ensure optimally tailored service provision and future healthcare planning according to the specific needs of families of YOD, and develop a care programme in collaboration between primary and specialist healthcare services.

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