Living with a progressive neurological disease has profound consequences for those affected, their family members and caregivers. Although not all of these illnesses are necessarily fatal, the need for support can be very great after a diagnosis.
Posted at 11:00 a.m.
While Quebec is in the election campaign, it seems important to us that the various political parties speak out on issues that affect people affected by these diseases.
Our group, Neuro Partners, brings together organizations that represent people with five diseases and their loved ones: muscular dystrophy, Huntington’s disease, Parkinson’s disease, multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS). ).
In Quebec, more than 50,000 people are affected by one of these diseases and more than 200,000 people have to live with the reality of a loved one who has it.
As people affected may be affected by a significant degree of physical and cognitive disability, they must call on various resources, such as lodging and home help.
Also, caregivers who support people with progressive neurological disease also need resources and support in their essential role.
During the last legislature, the government presented a plan on close assistance which runs until 2026. The other political parties have also put forward proposals on this subject. We would therefore like to thank all of our public decision-makers since this is a step in the right direction.
Lack of care
According to data collected from the progressive neurological disease community, it can be seen that the vast majority of people affected and their caregivers are dissatisfied with the services offered by the health care system. These people complain about the lack of resources for long-term care and care in the community.
More specifically, people with a progressive neurological disease feel isolated, in particular because they have no control over the home care and accommodation programs available to them. This trend is observable both among people who receive home care and among those who live in residential care.
Then, due to the lack of resources in terms of home help, many people with a progressive neurological disease who are still in their prime are forced to go and live in a CHSLD or in a mode accommodation that caters mainly to an elderly clientele, which imposes on them a reality that is unsuited to their needs.
Consequently, caregivers of people with Alzheimer’s are overwhelmed because they try to compensate for the lack of flexibility of the programs in force and the lack of adaptability of the accommodation methods. It is estimated that for every person with a progressive neurological disease, there are three caregivers on average. These are very often immediate family members.
Members of our community also highlight the difficulties in accessing new drugs, innovative treatments and clinical trials that are designed specifically for people with progressive neurological disease. Drug research and development is a long-term process, but once new treatments are discovered, their approval and accessibility must be accelerated. Often, these new treatments can slow the progression of the disease, or even improve the quality of life of those affected.
Concrete solutions
Living with a progressive neurological disease means living with the unpredictability of disease progression. People who suffer from it often have to overcome a series of very rapid bereavements, which makes the care required even more important. It is often the same thing for caregivers.
Currently, the decision-making power of people with Alzheimer’s and caregivers on several elements that directly affect their quality of life is minimal.
In view of these realities and the right of these people to dignity, we ask the various political parties to propose concrete solutions to improve the living conditions of people with progressive neurological disease and their caregivers.
Today, many families in Quebec want to hear them talk about programs adapted to people living with a progressive neurological disease in terms of home support, accommodation, support for caregivers and access to new innovative treatments.
* Co-signatories: Marie-Hélène Bolduc, Vice-President, Programs and Services, Muscular Dystrophy Canada; Caroline Champeau, Executive Director, Parkinson Quebec; Claudine Cook, Executive Director, Amyotrophic Lateral Sclerosis Society of Quebec; Francine Lacroix, Executive Director, Huntington Society of Quebec