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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

For the past ten years, I have been providing care to my mother with dementia and complex care needs whilst at the same time raising two children alone following the break-up of my marriage due to domestic abuse, and trying to combine this with work. I am exhausted and feel completely burnt out. Caring has negatively impacted on my work and career and affected my family life. My mother has recently moved to a small scale nursing home where she is so happy and so well looked after. There is huge pressure on families to continue to look after people with highly complex care needs and I question that. There are too few small scale nursing homes in Ireland.

Woman, 55
Ireland
[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 care for my husband after a stroke and brain hemorrhage, which means he needs me around the clock. I would like to have a paid time off of one week once a year and my husband is well taken care of and does not feel “deported”. After all, by taking care of him, I save the state a lot of money!

Woman, 72
Austria
[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 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 – 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

Thank you for dealing with this study as it will help many people.

Woman, 47
[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] 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
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