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.
[…] 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] None of the services I have used have the means to help dependent people with multiple sclerosis. It’s a horror. I have to do everything on my own because the home carers for example can’t come if I’m in hospital or on rehabilitation…the domestic helpers are no longer available, I am not entitled to a transport service … I never qualify. I am revolted. I live alone without family and it’s really hard. I’ve been able to get help at times but it doesn’t last because the budgets are so small. Even people with severe physical disabilities don’t have adequate help. The Aviq [Agence pour une Vie de Qualité] has not been functioning for years… the situation is very serious. And it has become even worse with Covid.
Woman, 40
Belgium
[translated] Additional taxation for end-of-life care is not equitable, considering that people already pay for health insurance. It would be necessary to eliminate corruption in the national health system, increase the quality of services and put a stop to the capture of the national health system by private entities who misappropriate funds that should be invested in our health, turning them into personal profit.
Woman, 37
Romania
[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 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
[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] 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 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
[…] When Covid came along it destroyed very important connections that enable older people in nursing homes to keep going & stay connected, to keep hope alive – the deterioration in my Mother in just 18 months was, & still is, devastating & resulted in her recent death. All those months we were unable to be by her side & keep her going, instead she wasted away as she was unable to comprehend what was going on with Covid, yet she was aware enough to know we were no longer with her. Looking through a window trying to communicate love & care to someone with dementia & who is very confused about why you wouldn’t come inside was one of the cruelest experiences. It was terrible to witness just how much our older people are let down by lack of creative, adequate, & in my opinion humane, care options because even in times of desperation when I considered taking my Mother out of the nursing home to live with me the pain of knowing that was not possible was very heavy as I knew the reality of what it had been like 4 years previously trying to care for her – lack of adequate home help, lack of adequate services – & now along now with significantly increased care needs it would have been a recipe for crisis. I became very unwell physically when I’d been involved in her care prior to her going to live in the nursing home.”
Woman, 46
Ireland
Start to talk openly [about] discrimination of elderly in Sweden which has been going on AT least 20 years by now [emphasis in original].
Woman, 52
Sweden
