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] In the next few years, Germany will need more good care facilities, if possible connected with other living facilities in which partners can also live. With high quality standards, but also with empathetic nursing and care staff and good living standards. With medical care, physiotherapy and a good activation program. Care should be affordable for all and not be passed on to family members who risk their health, private life and income for it. Nursing home care should not be stigmatized, as it relieves relatives of a great deal of work and ensures care free interaction with the persons to be cared for. Financial reasons should not be the reason why people do not go to a nursing home, because the psychological burden is too high.
Woman, 66
Germany
[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] Let’s not abandon the elderly, they do not deserve that.
Woman, 61
North Macedonia
[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] Sacrificing one life for another seems unacceptable to me. Everyone should be able to benefit from quality, professional services.
Woman, 38
Romania
[translate] I hope your study can contribute to helping older people in need of care.
Man, 26
Romania
[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] 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
[Translated] I was my husband’s caregiver for 7 years. He passed away from a rare and orphaned neurodegenerative disease (PSP). When the diagnosis was announced, we felt abandoned. Then it was very difficult to find quality help even if we paid. I retired 2 years before the legal age to continue to help him. Our last and most terrible test was to have his advance directives respected. He could no longer swallow, so he could not eat or drink. He refused the gastrostomy and wanted deep sedation. I had to fight again and again to have his wishes respected. So abandoned from beginning to end!
Woman, 62
France
[translated] Long-term care should be almost exclusively the prerogative of state institutions that should have the necessary infrastructure and resources to respond to the needs of older people and their families.
Man, 47
Romania
