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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 like such surveys to be more efficient and to have more participation in them, and consequently I would like to talk and learn more about these issues in order to take action and make life easier for many individuals.

Woman, 22
Albania

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 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

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 am not happy with the current nursing home system and it is a system that is focused on services and not on people. It is desirable that this changes with everyone’s help.

Woman, 41
Spain
[Translated] I have placed my mother in a nursing home due to advanced dementia. What is missing there are people who occupy themselves with the old people. […] Due to Corona and very limited visitation opportunities, loneliness is increasing. Thus all voluntary visiting services fall flat. […] As much as one pushes the models to accommodate old and young in shared apartments together, I found that my mother with advancing age – who loves her great-grandchildren very much – is simply more stressed when she is visited, it is too loud, too wild, etc.. So she doesn’t want to attend family gatherings anymore either. For a while she was very enthusiastic about the day care center in [redacted] – there she was offered everything she needed. Someone talked to her, they played and made music together, they prepared the snack together, etc. This combination between home and day care center would be IDEAL in my opinion.

Woman, 61
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] Support and training for family caregivers is needed in many ways.

Woman, 66
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] 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
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