I never qualify. I am revolted.
Family care for nursing home residents
Build on solidarity
There is a lot of work to be done
Open up about discrimination
Start to talk openly [about] discrimination of elderly in Sweden which has been going on AT least 20 years by now [emphasis in original].
Supporting the care workforce
The government should invest in training social workers, so that quality of care is as high as possible, and at the same time the social status of social workers, professional carers and nursing staff is raised, they are better paid, and young persons would like to choose such careers.
Abandoning the elderly
Long-term care requires trust
Unsure whether the study will have an impact
Older people need opportunities for socializing
Caregivers should get protected/priority status
The state should finance care
There is no long-term care help in Romania
Importance of the survey
Need for a systemic way of funding care
Care services need to be developed in the country
Long-term care needs to be prioritised by the state
Home care services should be developed
Sometimes the caregiver may be rejected from the role
The state should be completely responsible
End private health entities
Everyone deserves quality services
Need to plan for the future
The state should provide the necessary costs
My biggest fear
Home supports with a cookie cutter approach
My mother could afford to pay for care but we couldn’t get consistent reliable care due to the pandemic. We chose a residence but even they are limited to what they can provide and in Canada if a higher level of care is required then the person needs to go to LTC which wasn’t available at the time and she ended up staying in hospital until she passed. The government offers home supports with a cookie cutter approach; not tailored to what would make staying in her home possible. PSWs [personal support workers] to help shower and dress but no service to wash dishes. She could shower, [but] she needed help with dinner and dishes or laundry. The maximum hours [funded by the] Government is 4 hours/week not enough to sustainably stay home.
Support family caregivers
If the quality of care drastically improves
“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.”
More support for informal carers
“It’s very difficult to take care of elderly. It causes a lot of stress with effects on health. Wished for some more support structures. Needs have to be assessed often as they can change frequently.”
The care system we need
Care across borders
A system focused on services, not people
Caregiving should be a choice
What the future holds
I have Parkinson’s Disease and I dread what the future holds for me physically and mentally.
The right care for the right person
A timely topic
Thank you for dealing with this study as it will help many people.
No easy answers
Thanks for keeping this in the public eye. No easy answers, I’m not sure I agree with all of mine today, but we must keep trying!!
Diversifying long-term care provision
Evidence-based care development
More participatory research
Preparing for care workforce shortages
Preventing care need
Fairness in financing care
The goals long-term care
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.
Difficulties in accessing benefits
Huge pressure on families
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.
Unable to use a smart phone
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.
I save the state a lot of money!
I should receive a better benefit
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.
Urgent need for support
Appropriate in-home care
Both my parents died in a nursing home. I believe that had there been appropriate in-home care available outside of the hours of 9am to 5pm that my mother might have been able to live at home. As it was she suffered a severe fall at night and was admitted to hospital and declined there to the point that she required full-time care. The cost of overnight carers was exorbitantly expensive. The government should put more resources into providing high quality home care which doesn’t end at 5pm when patients are most vulnerable