Jean-Pierre Frognet (Belgium)
Personal experiences of living with dementia
June 2014: Jean-Pierre Frognet, Vice Chairperson of the European Group of People with Dementia (EWGPWD), is living with dementia in Belgium. He writes about his recent “trial period” in a day care centre.
Seven years have passed since my dementia diagnosis. My abilities continue to decline and, while I wish to remain active, it is becoming difficult to find activities to fill my day. Because of this, I recently decided to enrol in a day care centre that is close to my home.
Apart from its convenient location, the centre also seemed a good place to meet new people, get involved in a few activities and generally have a break from my usual daily routine. Moreover, it would give my wife Marie-Anne a well-deserved break.
My first day at the centre was in early December and I was feeling very stressed. All the managers and staff members were welcoming and polite, but my fellow residents were much more reserved. They all knew each other quite well and I could hardly blame them for wondering who I was and what I was doing there. All the residents except one were very old, but this did not bother me. This was, after all, a centre designed for older people. However, I soon discovered that the centre’s daily activities were also designed for that age group and this is where my difficulties began.
Unfortunately, there were very few physical activities. Instead, there was a sense of torpor - much stronger than what I often feel at home. I began to worry about what I was going to do all day, especially as I was not yet “accepted” by the other residents. I bear no grudge against them - it is not unusual for older people to be wary of newcomers in a care home and I certainly had no wish to impose my presence on them.
As it turned out, the day ended on a positive note: one of the staff members began to decorate a Christmas tree, so I volunteered to help and we spent a very pleasant afternoon. The following Friday was also quite interesting, as I decided to join the centre’s choir. I have lost my ability to read, so I had to concentrate very hard to remember all the words and notes. Anyone with Alzheimer’s disease can tell you that this is no easy task! I was glad to take on the challenge and this made for an enjoyable day.
I spent a total of two months at the care centre but was never really satisfied with my stay. In fact, the feeling that I did not belong there grew stronger with every visit. Admittedly, this particular centre was not specifically designed for people with Alzheimer’s disease. Because of this, I could not take part in certain activities like board and card games. As a result, many of my afternoons were spent sitting in an armchair, waiting for Marie-Anne to pick me up at 5 PM. This was very frustrating as I am only 62 years old and still have plenty of energy.
All of this led to my decision to stop attending the centre. I explained my misgivings to the managers - namely the lack of appropriate activities for people with dementia - and we parted on friendly terms. In Belgium, there are many such centres that are open to all people. However, in my area there are no dedicated facilities for people with Alzheimer’s disease. In addition, my expectations as a “young” patient go well beyond a birthday party or a game of cards. I see a great need for specialised institutions for people with dementia, especially the younger ones who are still in good physical shape.
I also wonder when politicians and organisations will understand that younger, active patients can still lead long and productive lives. When will they provide specialised facilities, so that younger people are not confined to traditional old peoples’ homes? When and how will they find ways to help us live with dignity for the rest of our lives?
They seem to have forgotten that all of us were active when the disease was detected, but suddenly - almost overnight - we found ourselves at home and inactive. The diagnosis was thrust upon us and we had no time to make any decisions, to prepare for early retirement or to learn to adapt to this incurable disease.
Today, seven years after diagnosis, I am in good physical condition and I still have the energy and the will to live a relatively normal life. I have lost contact with many ex-colleagues and friends from my working years, but have resolved to stay as active as I can, for as long as I can. The alternative - to give in, to stop seeking contact - would only hasten my mental demise and soon I should have no more will at all.
At home, I walk my dog, listen to music and occasionally do the shopping. I would like to help Marie-Anne with household chores but cannot remember how to do them. However, there are still some things we can do together. Even so, it is important that she also carry on her own social life; she cannot be my wife, caretaker and nurse all rolled into one.
Fortunately, we have access to various services to make this possible. Every day, a caregiver visits our home to help me with my morning toilet. I have a speech therapy session once per week and the Red Cross provides me with transportation if Marie-Anne is not available. We are also following couples therapy that helps us to deal with the consequences of my condition: amongst other things, it allows us to maintain our marital relationship despite the growing bias of our caregiver and patient roles.
There is a clear need for appropriate structures to help young people with dementia - a need that is all the more urgent as our population ages. Every person, regardless of income, deserves access to high-quality benefits and services. However, to achieve this will require the cooperation and involvement of each and every one of us, young or old, healthy or living with dementia.
Last Updated: Monday 16 November 2015