Early Onset Dementia Summit Appeal

Adopted unanimously by the summit participants and by the Alzheimer’s

Association Japan , February 12,2007

Early onset dementia is a progressive disease that usually strikes people in their 40s or 50s. Its causes are unknown, and it can strike anyone.

On this day, the Alzheimer’s Association Japan held an Early Onset Dementia Summit in the city of Hiroshima. More than 600 participants attended from all over Japan, including a number of people with dementia.

The summit included a keynote address by a medical specialist, appeals by dementia sufferers, reports from a wife and a daughter of patients, an explanation of government policy from the Ministry of Health, Labour and Welfare, and a symposium by people involved with early onset dementia.

Participants reaffirmed the importance of heeding the voices of people with early onset dementia and their families, understanding their ordeal, and promoting society-wide efforts, to address the problem.

As an outcome of today’s summit, the participants and the Alzheimer’s Association Japan wish to make the following appeal to people in government, business, and society as a whole.

  1. Many people with early onset dementia are people who are active in the workforce and who function as the primary breadwinners of their families.Many are also supporting and raising under-age children.
  2. This illness not only causes suffering to the patient but also places a great strain on family life.
  3. Worst of all is the anxiety that the patient will cease to be able to work, causing economic hardship for the family and social disadvantage for the children.
  4. What patients desire most fervently in order to banish these difficulties and anxieties is to be cured and continue working.
  5. However, if they have no choice but to live with their illness, they want to know that their families will not experience economic hardship, that their children can grow up with a sense of security, and that they will receive appropriate care.
  6. With the foregoing in mind, we believe that our society must accomplish the following.

(1)   Drug companies and the government must work to accelerate research and development into anti-dementia drugs and to expedite their approval and use.

(2)   All businesses should recognize their social responsibility and not discharge employees because of dementia but allow them to continue working until mandatory retirement age by placimg them in jobs and work sites commensurate with their abilities.The national government should implement effective employment assistance policies to this end.

(3)   The national and local governments should provide adequate and appropriate services for early onset dementia as part of the social welfare system, including long-term care insurance. In addition, it should support patients and their families through economic assistance with regard to taxes, health care costs, pensions, and so forth. Measures should also be instituted to assist with the children’s education and employment.

(4)   Insurance companies and mortgage lenders should designate early onset dementia as a “severe disability” and institute a system for paying insurance claims, providing relief on mortgage payments, etc.

All people should understand the Patient’s Conference Appeal issued in October  last year, be willing to support people with early onset dementia, and work to adopt such approaches as Hiroshima’s Hidamari no kai around the country.