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)

Short HistoryYounger people with dementia and AAJ

• AAJ was established in 1980

• 1st and 2nd 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.

Definition

People with dementia of the age between

1. 40 and 64 or

2. 18 and 64 or

3. Others

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

The 3rd Survey on Younger People with

Dementia and their Families

1.Method

• Questionnaire survey by post mail

• Subject: members of AAJ

• Period: Oct.20 to Dec.20 in 2001

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%)

2.Results(2) Main caregiver

45%

37%

11% 7%

wife husband daughter others

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

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

3. Discussion

• Care burdens

• Emotional influence to children

• Decrease of income

• Shortage of medical and social services

• Social discrimination

• Misunderstanding

• Others

4.Conclusions

• 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

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 c

are insurance program• Training of professionals• Public awareness

20th 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