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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 – 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 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] 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] There is a need to develop care services in the country, especially home (community-based) care as well as mental health, rehabilitation and recovery, and palliative care services.

Woman, 38
Republic of Moldova

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] 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] The development of home care services in Romania would contribute to increasing the quality of life of Romanians and would be of great help to family doctors [general practitioners] who are overburdened with time-consuming bureaucratic tasks.

Woman, 60
Romania

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] It is not easy to gain the trust of a stranger and let them take care of you. Trust and safety are also very important factors in receiving /providing long-term care.

Woman, 45
North Macedonia
[Translated] I lost my father last year (cancer). We kept him at home, with my brothers and sister, almost until the end; we are now looking after our mother. She has been in a nursing home for several months. We take turns every day to get her up, wash her, dress her, feed her and take her out. The staff at the care home is always on leave, there is a high turnover of staff. Not only does my mother pay, we each pay a small part of the accommodation, but we are the ones who take care of her from morning to night. That’s why we are part-time.

Woman, 55
France
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