1. Younger People with Dementia in Japan their lives,problems and needs Yoshio MIYAKE MD Teruyo YOSHIMURA RN Yasuo TABEI RCM Naomi ONOUCHI Alzheimer’s Association Japan (AAJ)

2. Short History Younger people with dementia and AAJ AAJ was established in 1980 1 st and 2 nd surveys on younger people with dementia and their families were conducted in 1991 AAJ demanded that the Ministry of Health and Welfare should improve medical and social services for younger people with dementia and their families in 1992.

3. Definition People with dementia of the age between 1. 40 and 64 or 2. 18 and 64 or 3. Others

4. Prevalence 1.Finland Study 260/100,000 (age:35-64) (from Sulkava et al.1985,Finland) 2.West London Study 13~166/100,000 (age:30-64) (from Harvey et al. 1998,UK) 3.Other studies

5. The 3 rd Survey on Younger People with Dementia and their Families

6. 1.Method Questionnaire survey by post mail Subject: members of AAJ Period: Oct.20 to Dec.20 in 2001

7. 2.Results(1) Number of response:124 Sex: male 46.8%. female 53.2% Age of onset: 44 to 63 Diagnosis: Alzheimer’s disease(79.8%) Pick’s disease(4.0%) Others(16.1%)

8. 2.Results(2) Main caregiver

9. 2.Results(3) Average period between the onset and the first contact with a doctor: 1.4 years Used services: Day center (49.2%) Home help (30.6%) Short stay (28.2% ) Others

10. 2.Results(4) Annual income:0~1 (38.0%) ( million yen) 1~2 (14.9%) 2~3 (28.8%) 3~ (18.3%) Emotional aspects Social aspects

11. 3. Discussion Care burdens Emotional influence to children Decrease of income Shortage of medical and social services Social discrimination Misunderstanding Others

12. 4.Conclusions

13. Early diagnosis, assessment and referral Access to specialist services Adequate financial support Good employment practice Education, training and information (from Alzheimer’s Society,UK) Charter for younger people with dementia and their cares

14. Younger people with dementia and AAJ present and future Support for younger people with dementia Support for family members family meeting, helpline, counseling Improvement of medical services easy access to specialist and appropriate treatment Improvement of social services appropriate care and facilities under the public long term care insurance program Training of professionals Public awareness

15. 20 th International Conference of ADI Kyoto 2004 Date : October 15 to 17,2004 Venue : Kyoto, Japan Theme: Dementia Care in an Aging Society www.alzheimer.or.jp