Newsletter 2001

"Proper Administration Committee" for Utilization of Social Services
The Social Welfare Law was recently devised and the above committee was formed so that the social welfare services could be appropriately utilized by people with dementia. In cases where the users of services, either the residents of nursing homes or people cared for at home, have opinions to express, they can contact the committee of the local government by visiting, letter, telephone, facsimile, or E-mail. These may be complaints about food, requests to home helpers and staff and so on.. The committee would try to cope with those problems by advising, counseling, researching, coordinating and lobbying.

Questionnaire Survey about the Living Design Suitable to the Demented
This survey was done in January and February, 2002 and 999 forms were filled in and returned. Over 60 percent of those replied that rebuilding or remodeling to make areas "barrier free" was necessary. If expense and advice are provided, western style toilets, barrier free entrances, and bed and chair styles are preferred. Thirty percent of the repliers utilized the Public Long Term Care Insurance System for caregiving equipment, and 20 percent, remodeled their houses.As the research on housing of the demented looks inadequate, it might be important for knowledge and ideas born from "trial and error" be systematized..

17th Annual Research Forum  (additional report) 
The 17th National forum started with a plenary talk by Dr. Hasegawa. Some of the main points he addressed were:
Very soon second generation drugs for Alzheimer’s disease will be developed. Attention will also be focused in creating environments where people with dementia can live in a normalized manner. He also called for spiritual well-being in dementia care.
There were also some case reports. One of these was by a lawyer called Watanabe who spoke about the rapid deterioration of his father’s dementia and his feelings of hopelessness. There was also discussion by the head nurse of a hospital, about dementia care without resorting to physical restraints. One impressive report was about a difficult case in a psychiatric hospital where the patient felt less agitated when someone stayed by her side until she went to sleep. Another report dealt with the desire to make group homes for people with dementia available also to people evaluated as Level III to V under the LTCI (Long term care insurance). There was also a presentation on music therapy for those who wished to continue providing dementia care at home.
In the Q & A session, most of the questions focused on abolition of restraints in dementia care and on unit care. All in all it was a very productive and inspirational annual forum on dementia care.

17th Annual Research Forum                          
The 17th Research forum was inaugurated in Miyazaki prefecture on October 21st, 2001. Over 1400 people participated and these included members from various chapters of Alzheimer's Association as well as from the local association from the host city. Participants also included representatives from social and medical organizations. The plenary speech was by Prof. emeritus Hasegawa from St. Mariana University Hospital and there were 6 other speakers who addressed the issue of "Quality of Care". This year for the first time sign language was used during the forum.

Younger dementia: how to convey to children? 　(Dr. Yoshio Miyake)
It is not only a spouse who is involved when a person has younger dementia. The family may have school going children or children of marriageable age or who are working. The question is: how do these children view their parent who has dementia at a relatively young age?
The other day, the Kyoto chapter of the Alzheimer Association took up the issue of children with a parent suffering from younger dementia. Talks abounded about children who look down upon the parent who has dementia, those who refuse to stay at home since it is too boring to do so, children who argue with the caregiver parent and others who don’t mention their ill parent to their friends. Some also mentioned about children who are concerned about the implications of being burdened with genetic inheritance from their parent.
Of course, it is quite understandable when a caregiver is unable to reveal to the society about his or her spouse falling a victim to an intractable disease like dementia. They themselves need time to accept the fact that the person with whom they have shared their married life is slipping down the path of dementia at a young age. And while the parents are facing such a conflict it is even harder for children to express understanding or judgment about their parent’s illness. As a parent therefore itis necessary to have open discussions with the children about the issues that is worrying them such as their future, their jobs, marriage etc. I would like to encourage such discussions to take place in future meetings of the Alzheimer Association. Perhaps it is also necessary to conduct meetings involving children as is done in the Alzheimer Associations in Australia and America.
In the Kyoto meeting, there were also talks about children who had openly discussed about their parent’s dementia with their friends and others who had decided to study social welfare in their university as a consequence of their parent’s ailment.

Voices from members regarding appeal on younger dementia
In response to the appeal that the Alzheimer Association Japan (AAJ) made to the Ministry of Health Labor and Welfare, we received numerous letters from all over Japan from spouses providing dementia care. Here we introduce excerpts of the letters written by wives caring for husbands with young onset dementia.

Case : I am indeed happy and grateful that the AAJ has decided to take up the issue of young onset dementia. My husband turned 60 in January. Symptoms of dementia started to appear four years ago. With the implementation of the LTCI, we started to use day service twice a week. However, I hardly had had time to relax, when within three months I was asked to move him to a geriatric welfare center. Here too he was asked to leave the place after a month. Now I managed to get him admitted into an old people home and am continuing with my days amidst much struggle.
Since the homes for elderly were all full, I had to admit my husband to a geriatric welfare center. As it is it takes time for people like him to get used to a certain environment, and even the slightest change can throw him into a state of agitation, yet only short term stay is available at these establishments and he has to be moved around to different places. Even if there is a special dementia unit, why should people with dementia be allowed to stay only for a limited period of time? In the case of my husband they asked me to move him at the end of three months. It isn't that he used to shout or suffer from delusions or show violent behavior. All he did is try to open the door and in the process break the weak lock. I apologized and replaced it. He also often switched on the fire alarm. All these incidents turned out to be the reason why the authorities asked him to be moved.
Special dementia units are isolated places that are lacking in life. The rooms don't have chairs, tables, beds, televisions or any of the bare minimal objects that lend comfort to the living environment. In a bare room such as this, my husband who had always led an active life would carry the blankets around the room for want of something to do. That was his daily routine. But his action obviously caused much concern to the authorities. I do wish that these dementia units contained some objects which the residents could touch freely or have something to do that would hold their attention. Knowing that a vase of flowers would be unsafe I filled a basket with wisteria and put it in his room and was rewarded with a smile from one of the elderly residents of the place. Her comment " its so beautiful. I like to walk by this place" made me so happy that I could have cried.
Although allowance for a handicapped person is only allocated to persons who have an intractable illness, dementia is not considered at par to other psychiatric conditions. A person with dementia who is unable to do anything on his own is allocated level 2, yet someone with a pace maker and who can perform all tasks is given Level 1.
I am taking care of my husband and my 85 year old father-in-law and if there is one thing I feel strongly about, its this: what great help and respite it would be if there was a place that would openly state "come to us any time you are in need. You can entrust us to care for your loved one". But this seems like a fairy tale. Yet I still harbor the hope that some day there will be an ideal place where he can live in freedom, experience life around him, mix with people young and old and live as long as he does without the fear of being asked to leave. It hurts to know about establishments that reject elderly with dementia.