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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] You’ve made me think … I will have to come up with a plan for the future.

Woman, 58
Romania
[Translated] Do not forget to correlate loss of functional independence with disease. Do not forget that 30% of dementias can be prevented and that frailty is preventable and reversible: prevention must also be funded.

Man, 36
France
[Translated] I would urgently need support as far as my parents are concerned. They live alone, my father doesn’t speak at all anymore, can’t be reached by phone either, and my mother now and then. I think they both need urgent support, but I can’t talk to them anymore. My mother had a serious brain operation, I was never informed by any doctor, by any nurse, by any social worker…….what can be done, what is available, nothing at all….

Woman, 52
Austria
[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

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] Support and training for family caregivers is needed in many ways.

Woman, 66
Austria
[translated -excerpt, emphasis in original text] Home-based assistance offered by the Romanian state to older people DOES NOT EXIST. This is unacceptable. […] for sick people and the elderly the situation is extremely BAD. There is no help. No state funded services to help them at home or in an institution, facilities for the elderly are so bad they are more like prisons or labour camps. I also strongly advise you to do a study and personal visits to psychiatric hospitals, and how mental health is treated in Romania.

Woman, 39
Romania
[Translated] I have long cared for my sister and my mother, and now my husband who has cancer and is bedridden! I wish someone [could support me] for a few hours or once a few days so that I could go away once with my daughter and granddaughter or make a trip!

Woman, 67
Austria
[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
[Translated – excerpt] Long-term care is an obligation of society. The administration has to participate and set criteria for equality, but it has to get involved in management, if it wants to do so under the same conditions as everyone else. Give a choice to the citizen who chooses what he/she wants, not what the administration thinks (free choice). Care should be directed by the people, not only centred on them. Empowerment of the citizen. Promote professional training and above all competences and skills. Increase staff ratios and salaries, and above all work/family/leisure balance. There is a lot of work to be done.

Man, 55
Spain
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