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The InCARE project will contribute to the design  of a coherent and coordinated approach to the development of national long-term care policy and care services at local and regional level, by establishing socially innovative and participatory decision-making processes.

We work with care users, care provider organizations and policy-makers in Spain, Austria and North Macedonia to design, implement and scale-up innovative care services, with the ultimate goal of improving the well-being of older people and their families and increase their access to adequate and affordable care.

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.

Woman, 55
Canada
[…] When Covid came along it destroyed very important connections that enable older people in nursing homes to keep going & stay connected, to keep hope alive – the deterioration in my Mother in just 18 months was, & still is, devastating & resulted in her recent death. All those months we were unable to be by her side & keep her going, instead she wasted away as she was unable to comprehend what was going on with Covid, yet she was aware enough to know we were no longer with her. Looking through a window trying to communicate love & care to someone with dementia & who is very confused about why you wouldn’t come inside was one of the cruelest experiences. It was terrible to witness just how much our older people are let down by lack of creative, adequate, & in my opinion humane, care options because even in times of desperation when I considered taking my Mother out of the nursing home to live with me the pain of knowing that was not possible was very heavy as I knew the reality of what it had been like 4 years previously trying to care for her – lack of adequate home help, lack of adequate services – & now along now with significantly increased care needs it would have been a recipe for crisis. I became very unwell physically when I’d been involved in her care prior to her going to live in the nursing home.”

Woman, 46
Ireland

The government should invest in training social workers, so that quality of care is as high as possible, and at the same time the social status of social workers, professional carers and nursing staff is raised, they are better paid, and young persons would like to choose such careers.

Woman, 69
Poland

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.

Man, 63
Ireland
[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.

Woman, 61
Austria
[Translated] I don’t understand why people with high income and property don’t have to pay for their own place in [residential] care homes!

Woman, 74
Austria
[translated] Sacrificing one life for another seems unacceptable to me. Everyone should be able to benefit from quality, professional services.

Woman, 38
Romania
[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.

Woman, 36
Austria
[Translated] There are now already too few caregivers and nothing is done about it! How will that be in 10 years ?!

[No gender specified], 68
Austria
[translated] Long-term care should be almost exclusively the prerogative of state institutions that should have the necessary infrastructure and resources to respond to the needs of older people and their families.

Man, 47
Romania
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