In English

The Danish Alzheimer Intervention Study (DAISY) is a research program, which has the overall aim to improve the early social support to patients with dementia and their caregivers. Previous research has shown, that being a caregiver to a patient with moderate to severe dementia is associated with stress and a higher risk of social withdrawal, depression, drug treatments and hospitalisation. Previous studies have indicated that in moderate to severe dementia training, counselling and support to caregivers may reduce the burden and the risk of depression. However, social support and counselling is not offered on a systematic basis to caregivers With recent advances in therapeutic options for patients with Alzheimer's disease, the diagnosis is now often established at very phase in the disease. Therefore, social intervention programs should be redesigned to focus on the needs early in the course of the disease, and to include counselling and support not only to the caregivers but also to the patients.

The DAISY program includes the following projects:

• A multi-center randomised controlled single-blind trial of a multi-faceted social intervention program to patients with recently diagnosed mild Alzheimer's disease and their caregivers
• A study on the health-economic aspects of early social intervention in dementia
• A study on the impact of social network and social activities in patients with early phase dementia and their caregivers.
• A study on legal aspects of early phase dementia.

Study 1 includes 331 patients, who were randomised to either usual care or an intensive social intervention program. The participants were recruited in 5 centers (5 counties) in Denmark: Ribe, Ringkøbing, Vestsjælland, Roskilde counties and the Copenhagen and Frederiksberg communities. A wide range of quantitative assessments of health status, cognitive performance, quality of life, depressive symptoms, and activitities of daily living, will be included in the efficacy analysis at 6 and 12 months. Long-term follow-up may be done, based on information in the national registries.

Intervention program

The intensive social support and counselling program will be organized and run by the project coordinator in each center. For the teaching courses and support groups she will have assistance from other local professionals and volunteers. The intervention program aims at combining the information and support provided to the patients and the caregivers respecting. The objective of the programs is to prevent or reduce, depressive symptoms, impairment of health related quality of life, and loss of social network.There are 5 main components in the 6 months intervention program:

1. Individualized counselling meetings for the patients as well as for caregivers (fixed and open agendas)
   1. 2 meetings with patient and carer
   2. 2 meetings with patient
   3. 2 meetings with carer
   4. 1 meeting with patient, carer, and family network
2. Teaching course for patients, approximately 12 participants, 5 scheduled sessions, including at each session:
   1. Information about key issues, supported by written information, (centralized program for al teachers)
   2. Support group activity
3. Teaching course for carers (will take place simultaneously with the course´s for patients, in a separate room), approximately 12 participants, 5 scheduled sessions, including at each session:
   1. Formalized teaching course (centralized program, local teachers)
   2. Support group activity
4. Telephone counselling
   1. Follow-up phone calls from project coordinator to patient/carer every 3 weeks
5. Logbook to be kept by patient and carer (separate books) may be used at counselling visits to set the agenda. To be kept by patient/carer.

A guideline for the intervention program will be provided for project coordinators. Separate handbooks with information materials for patients and caregivers will be used and evaluated in all 5 centers

Qualititative aspects

Qualitative research methods will be used in order to assess qualitative aspects of the benefit associated with the various parts of the intervention program.

Time line

Inclusion: March 1 2004 to August 1 2005

Last 12 months follow-up visit: August 2006

Data collection (excl. registry based data), quality check, analysis and synthesis: December 31 2007

Research management

The Memory Disorders Research Group at Rigshospitalet, CopenhagenUniversity Hospital.

Project management

The Memory Disorders Research Group at Rigshospitalet, Copenhagen University Hospital in collaboration with the National Board of Social Services, The Ministry of Social Affairs.

Collaborators

The Institute for Health Care Research, The University of Southern Denmark, Odense, the Institute for Public Health, University of Copenhagen, and the Alzheimer Association.

Financial support

The research is supported financially by the National Board of Social Services, the Ministry of Social Affairs, with contributions from the Ministry of Health, and the Danish Health Foundation, the Danish Alzheimer Research Foundation and the Research Consul of the Copenhagen Hospital Corporation.

For further information

Ane Eckermann - Telephone: +45 35455308 or mailane.eckermann@rh.hosp.dk

Contact: Fuldmægtig Knud D. Andersen, tlf. 72 42 39 72