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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.

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

Man
Spain
[translated] In general, the state should take care of the financing of care services and introduce a system for quick access to emergency medical care.

Woman, 72
North Macedonia

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] In Belgium, we are immensely lucky that our health care system is based on solidarity. It is important that this continues and is even strengthened to avoid inequalities.

Woman, no age specified
Belgium
[…] 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
[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

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 -excerpt] I would like to see society organise a systemic way of funding care for older people in their own homes for as long as possible, and then in institutions when they need it. Funding should be provided through long-term contributions to an individual’s fund, as for a pension, or through insurance. The problem of paying for care for the elderly is a major problem, and the hardship and burden on the person being cared for and on those close to them is great.

Man, 63
Slovenia

I have Parkinson’s Disease and I dread what the future holds for me physically and mentally.

Woman, 75
Ireland
[Translated] Support and training for family caregivers is needed in many ways.

Woman, 66
Austria
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