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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.

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

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
[…] 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

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] 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

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 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)

Woman, 41
Austria
[translated] You’ve made me think … I will have to come up with a plan for the future.

Woman, 58
Romania
[translated] I am of the opinion that a pensioner has paid a rather large sum to the State month after month all his life. In old age, when that person would need long term care the state should participate in the necessary costs of the care and not leave the family to do it alone.

Woman, 40
Romania
[translated] Let’s not abandon the elderly, they do not deserve that.

Woman, 61
North Macedonia
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