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[Translated] I was my husband’s caregiver for 7 years. He passed away from a rare and orphaned neurodegenerative disease (PSP). When the diagnosis was announced, we felt abandoned. Then it was very difficult to find quality help even if we paid. I retired 2 years before the legal age to continue to help him. Our last and most terrible test was to have his advance directives respected. He could no longer swallow, so he could not eat or drink. He refused the gastrostomy and wanted deep sedation. I had to fight again and again to have his wishes respected. So abandoned from beginning to end!

“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.”

[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.

[Translated] I don’t understand why people with high income and property don’t have to pay for their own place in [residential] care homes!

[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.

Every person in need of care must be cared for so that he or she has all the dignity required. Taking into account their limitations, they must be provided with the highest possible quality of life. This care must be provided by family members and professional staff so that their affective and assistance needs are covered.

[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.

I have Parkinson’s Disease and I dread what the future holds for me physically and mentally.

[Translated] It would be good if the decisions were also upheld when the care allowance is raised. Often the decision ends up in court and it is possible to challenge it. It should not be made difficult for those who are dependent on this financial support.

[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.