The present study will examine how young-onset-dementia patients and their families can be supported in their home environment as long as possible and institutionalisation can be delayed. For this the functioning and care needs of young-onset-…
ID
Source
Brief title
Condition
- Structural brain disorders
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
The main outcome variables are care needs, assessed with the Camberwell
Assessment of Needs (CANE, Reynolds et al. 2000); problem behaviour, measured
with the NeuroPsychiatric Inventory (Cummings, 1994); and sense of competence
(Vernooij-Dassen, 1999). These outcome variables will be assessed every 6
months during 4 years.
Secondary outcome
Secondary variables for the patient:
- Depressive symptoms (Cornell scale for depression)
- Dementia severity (Global Deterioration Scale)
- Cognitive functioning (MMSE; Frontal Assessment Battery)
- Awareness (GRAD)
- ADL functioning (IDDD)
Secondary variables for the caregiver:
- Depressive symptoms (HDRS)
- Psychological complaints (SCL-90)
- Personality (neuroticism; NEO-FFI)
- Copingstyle (UCL)
- Quality of life(RAND-36)
- Quality of the relationship
- Care strategy
- Problems (qualitative interview)
Background summary
Dementia characteristically affects older people but can also have an onset
before the age of 65. Early-onset dementia has devastating consequences for the
person with dementia and the family. They experience specific problems due to
their relatively young age.
However, most care facilities are focussing on an elderly population and can't
fulfill the needs of these young-onset-dementia patients.
Despite its importance, investigators have paid little attention to the
specific problems and needs of young-onset-dementia patients and their
families. More knowledge is needed to develop specific and appropriate care
facilities for this group.
Study objective
The present study will examine how young-onset-dementia patients and their
families can be supported in their home environment as long as possible and
institutionalisation can be delayed. For this the functioning and care needs of
young-onset-dementia patients and their families will be examined.
Study design
It is a 2 year longitudinal observational study of 2 cohorts (patients in early
stage and patients in day care).
Study burden and risks
The burden concerns 5 visits in 2 years; the measurements at 6 and 18 months
are short monitoring visits; visits at baseline, 1 and 2 years are more
extensive. A structured interview will be performed (± 1 1/2 hour) with patient
and caregiver; caregivers are asked for an additional interview (±50 min.) and
questionnaires (±75 min.). A semi-structured interview will be performed with
the caregiver and possibly other family members. In addition a postal survey
will be adminstered two times every year after the two-year follow-up period.
This means a total follow-up time of four years.Methods are in line with data
collected for regular patient care. There are no risks involved. The
examination only concerns a time investment. Since the purpose of this study is
to examine needs in young-onset-dementia it is neccesary to include dementia
patients and family caregivers in this study.
Dr. Tanslaan 12
Maastricht 6229ET
NL
Dr. Tanslaan 12
Maastricht 6229ET
NL
Listed location countries
Age
Inclusion criteria
Dementia diagnosed according to the DSM-IV criteria for dementia
Early dementia onset (before age 65)
Part 1: community living patients without daycare
Part 2: community living patients with day care
Exclusion criteria
Dementia caused by HIV, Down syndrome, Brain injury, Huntington's disease
Lack of a reliable informant
Lack of informed consent
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL17289.068.07 |