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I have Parkinson’s Disease and I dread what the future holds for me physically and mentally.

[translated] This issue [of long-term care] needs to be discussed and prioritised by the state, because the population is ageing, children are going abroad and local structures for [supporting older people] need to be improved and a concrete annual budget established. We will all reach an age when we need help.

[Translated] I am curious about the results… It is important to increase the prestige and financial value of care at home! Explore even more possibilities for care in old age… (shared housing, generation parks and others)

[Translated] I care for my husband after a stroke and brain hemorrhage, which means he needs me around the clock. I would like to have a paid time off of one week once a year and my husband is well taken care of and does not feel “deported”. After all, by taking care of him, I save the state a lot of money!

[Translated] I have placed my mother in a nursing home due to advanced dementia. What is missing there are people who occupy themselves with the old people. […] Due to Corona and very limited visitation opportunities, loneliness is increasing. Thus all voluntary visiting services fall flat. […] As much as one pushes the models to accommodate old and young in shared apartments together, I found that my mother with advancing age – who loves her great-grandchildren very much – is simply more stressed when she is visited, it is too loud, too wild, etc.. So she doesn’t want to attend family gatherings anymore either. For a while she was very enthusiastic about the day care center in [redacted] – there she was offered everything she needed. Someone talked to her, they played and made music together, they prepared the snack together, etc. This combination between home and day care center would be IDEAL in my opinion.

[translated] I would gladly take care of my family members if there were not serious issues that put a big barrier between me and them. It’s easy to place the responsibility on the shoulders of family members when one needs support, but no one considers that the one who is supposed to be the caregiver may be rejected from this role. It is a particular situation, but unfortunately not unique.

[Translated] None of the services I have used have the means to help dependent people with multiple sclerosis. It’s a horror. I have to do everything on my own because the home carers for example can’t come if I’m in hospital or on rehabilitation…the domestic helpers are no longer available, I am not entitled to a transport service … I never qualify. I am revolted. I live alone without family and it’s really hard. I’ve been able to get help at times but it doesn’t last because the budgets are so small. Even people with severe physical disabilities don’t have adequate help. The Aviq [Agence pour une Vie de Qualité] has not been functioning for years… the situation is very serious. And it has become even worse with Covid.

Every person in need of care must be cared for so that he or she has all the dignity required. Taking into account their limitations, they must be provided with the highest possible quality of life. This care must be provided by family members and professional staff so that their affective and assistance needs are covered.

[Translated] There are now already too few caregivers and nothing is done about it! How will that be in 10 years ?!

Thank you for dealing with this study as it will help many people.