Good Morning Doctor Muir. After being trained as a general practitioner, you specialized in geriatrics over the years and, more particularly, in the ageing of disabled people. You will be speaking about the theme: “Taking care of the ageing person”. Is this a new issue in particular regarding disabled people?
Yes, this issue is relatively new as it has been noticed that disabled people’s life expectancy has considerably increased during the 20th century (about 50 years). It has therefore nearly caught up with that of the general population, even if there are still situations of precocious ageing. This therefore induces that these people, the same as their parents when they grow old, are confronted with vision and audition difficulties and the apparition of organic pathologies which imply changes in their life style which need to be adapted to their new abilities. Those close to them must develop adapted accompaniment. The accompaniment, as for the rest of the population, must also include the possibility that the person may develop cancer or a degenerative neurological disease.
How is the way in which the people living with genetic intellectual disabilities are cared for and looked after different or similar to other people ?
In the case of a genetic intellectual disability, it seems important to me to go over the following points. Certain genetic anomalies induce, by themselves, specific malformations or malfunctions which need to be taken into account during the whole life of a person. Knowing that these complications exist will enable to develop a preventive approach leading to accompaniment and treatment, if possible. More often than not, it is not about curing the disabled person but about walking together towards accompaniment, comprehension and adaptation to the various needs and difficulties. This approach means learning to adapt, “learning to grow old” which definition, given by Dr. Ploton, I like: “Ageing is mourning the picture of yourself to invest another while remaining who you are!”.
Is this sufficiently taken into account in families with people living with Down Syndrome or, more largely, with genetic intellectual disabilities? What are your expectations for these days and what would you like to pass on to families on this Day For Families?
In the case of genetic diseases, one can only promote this attentive accompaniment approach for disabled people and their loved ones. Of course, one also needs to put forward, as much as possible, the corresponding form of prevention and adaptation based on how dependant each disabled person is. It is exactly what the Jérôme Lejeune Institue Days are about…
There is still a fair amount of work to be done for this long term accompaniment.
Further up, I spoke about the necessity of developing an adapted approach of accompaniment. And it is with these last words that I would like to conclude! We need to develop long term accompaniment, lucid and adapted to the disabilities and dependence that can sometimes be variable in time. This dependence can change during life, sometimes decreasing but sometimes also getting worse!
It is all about finding a place for people to live in which makes it easier for them to progress and express themselves but also to meet people like themselves without apprehension, on a daily basis! A place for living where one can accept one’s limits and the possibility of receiving help for handling pocket money and the protection of goods. Finally, a place for living which enables one to get through in the moments in which, while belonging to a community, life imposes to adapt to the loss of a loved one.