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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.

Both my parents died in a nursing home. I believe that had there been appropriate in-home care available outside of the hours of 9am to 5pm that my mother might have been able to live at home. As it was she suffered a severe fall at night and was admitted to hospital and declined there to the point that she required full-time care. The cost of overnight carers was exorbitantly expensive. The government should put more resources into providing high quality home care which doesn’t end at 5pm when patients are most vulnerable

Woman, 44
Ireland
[translated] Well, I hope that caregivers get a protected or priority status – I mean at work and as workers, everyone needs us, our attention, and to some extent it feels like we are omnipotent and can care for others, care for ourselves and sometimes, care for our parents. That is wrong.

Man, age not specified
North Macedonia
[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.

Woman, 45
Republic of Moldova
[translated] The development of home care services in Romania would contribute to increasing the quality of life of Romanians and would be of great help to family doctors [general practitioners] who are overburdened with time-consuming bureaucratic tasks.

Woman, 60
Romania
[Translated] I lost my father last year (cancer). We kept him at home, with my brothers and sister, almost until the end; we are now looking after our mother. She has been in a nursing home for several months. We take turns every day to get her up, wash her, dress her, feed her and take her out. The staff at the care home is always on leave, there is a high turnover of staff. Not only does my mother pay, we each pay a small part of the accommodation, but we are the ones who take care of her from morning to night. That’s why we are part-time.

Woman, 55
France
[Translated] I would not want my future to be in the hands of politicians but in the hands of qualified experts.

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

Woman, 38
Romania

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

Woman, 47

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
[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
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