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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 elderly grandmother lived with my family for 25 years and she needed substantial care for the last 15 years of that. My mother was a full time carer for her and could not work. There was definitely family expectation that this would be the case. Eventually she was too frail to be at home and she lived in a nursing home for the the last 10 or so years of her life. Both of my parents mental and physical health improved substantially after that. They were still involved in visiting frequently, bringing food, doing laundry but they were also able to live their own lives. I feel very strongly that care should be provided for older people

Woman, 40
Australia

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
[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.

Woman, 40
Belgium

“It’s very difficult to take care of elderly. It causes a lot of stress with effects on health. Wished for some more support structures. Needs have to be assessed often as they can change frequently.”

Woman, 49
Malta
[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.

Woman, 43
Republic of Moldova

I visit my stepmother who is in a wheelchair after a severe stroke 14 years ago. She can cope with the costs of care so I can see the restrictions she faces even when there is sufficient money. She is physically but not mentally disabled. She is unable to use a smart phone or an I-pad and needs 24 [hour] help. She cannot use even disabled toilets. Access into taxis is difficult and impossible in a private car.

Woman, 74
United Kingdom
[Translated] I was my husband’s caregiver for 7 years. He passed away from a rare and orphaned neurodegenerative disease (PSP). When the diagnosis was announced, we felt abandoned. Then it was very difficult to find quality help even if we paid. I retired 2 years before the legal age to continue to help him. Our last and most terrible test was to have his advance directives respected. He could no longer swallow, so he could not eat or drink. He refused the gastrostomy and wanted deep sedation. I had to fight again and again to have his wishes respected. So abandoned from beginning to end!

Woman, 62
France

Start to talk openly [about] discrimination of elderly in Sweden which has been going on AT least 20 years by now [emphasis in original].

Woman, 52
Sweden
[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.

Woman, 37
Romania
[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.

Woman, 52
Romania
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