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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 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] 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
[…] 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
[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

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

“Given the current state of care facilities, I would prefer to take care of my parents/loved ones at home and if I should require services I would prefer to be taken care of at home. The way I view care facilities in their present state is that these facilities provide everything needed to keep a person alive but greatly reduce their quality of life (e.g., loss of dignity, reduced access to meaningful activities and social interaction, loss of agency etc.). I believe it is practical, feasible and in governing bodies best interest in the long term to improve quality of care in these facilities. We now have good evidence for activities/programs that can improve wellbeing and physical health in older adults. We should be utilizing this evidence to improve the lives of older adults. If the quality of care provided in these facilities drastically improves, I would view this as the preferred option. But we are not there yet.”

Woman, 31
Canada
[Translated] It is complicated to get help when the parent who needs it is living abroad (France) and it is impossible for him/her to live alone. Because no retirement home can be found for him/her, the only solution is to take him/her at home (in another country of the European Union)

Woman, 63
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
[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
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