InCare – InCARE – Supporting INclusive development of community-based long-term CARE services through multi-stakeholder participatory approaches

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.

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] I would gladly take care of my family members if there were not serious issues that put a big barrier between me and them. It’s easy to place the responsibility on the shoulders of family members when one needs support, but no one considers that the one who is supposed to be the caregiver may be rejected from this role. It is a particular situation, but unfortunately not unique.

Woman, 52

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] 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

[Translated] I would not want my future to be in the hands of politicians but in the hands of qualified experts.

Man

Spain

[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] 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

[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] 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] I am curious about the results… It is important to increase the prestige and financial value of care at home! Explore even more possibilities for care in old age… (shared housing, generation parks and others)

Woman, 41

Austria

More testimonials here