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“Given the current state of care facilities, I would prefer to take care of my parents/loved ones at home and if I should require services I would prefer to be taken care of at home. The way I view care facilities in their present state is that these facilities provide everything needed to keep a person alive but greatly reduce their quality of life (e.g., loss of dignity, reduced access to meaningful activities and social interaction, loss of agency etc.). I believe it is practical, feasible and in governing bodies best interest in the long term to improve quality of care in these facilities. We now have good evidence for activities/programs that can improve wellbeing and physical health in older adults. We should be utilizing this evidence to improve the lives of older adults. If the quality of care provided in these facilities drastically improves, I would view this as the preferred option. But we are not there yet.”

[translated] My biggest fear is that I will be powerless to support and provide for myself. That would place my family in a difficult financial and physical situation, given that my future salary and pension will not be enough to cover all expenses.

[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] Additional taxation for end-of-life care is not equitable, considering that people already pay for health insurance. It would be necessary to eliminate corruption in the national health system, increase the quality of services and put a stop to the capture of the national health system by private entities who misappropriate funds that should be invested in our health, turning them into personal profit.

[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] It is not easy to gain the trust of a stranger and let them take care of you. Trust and safety are also very important factors in receiving /providing long-term care.

[Translated] It would be good if the decisions were also upheld when the care allowance is raised. Often the decision ends up in court and it is possible to challenge it. It should not be made difficult for those who are dependent on this financial support.

[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.

My mother could afford to pay for care but we couldn’t get consistent reliable care due to the pandemic. We chose a residence but even they are limited to what they can provide and in Canada if a higher level of care is required then the person needs to go to LTC which wasn’t available at the time and she ended up staying in hospital until she passed. The government offers home supports with a cookie cutter approach; not tailored to what would make staying in her home possible. PSWs [personal support workers] to help shower and dress but no service to wash dishes. She could shower, [but] she needed help with dinner and dishes or laundry. The maximum hours [funded by the] Government is 4 hours/week not enough to sustainably stay home.

As a person caring for my spouse I receive a payment from my social protection department to cover my role. This payment amounts to less than 1x€ per hour as I’m needed to be there 24 hrs per day to assist 365 days per year. I think I should receive a better benefit to do this task.