We’re a group of researchers, from different disciplines who are working together to try and improve the lived experience of older people. Nearly everyone wants to stay in their own home for as long as they can. But sometimes this isn't possible, and some people have to start thinking about alternatives, such as a care home.
These decisions can be difficult, especially when we are all led to believe ‘home is best’. What will help people live as well and as safely as possible? Home may not always be best when life becomes a struggle of having to manage and so the pros and cons of moving into care need to be decided.
Because this decision is usually only considered following some kind of health or social care crisis, individuals are not always well enough to be able to make informed choices. So the task of choosing an appropriate home falls to someone else, such as a close relative or significant other. Should the individual not have the capacity to make decisions, then a person formally appointed with Power of Attorney for that individual will make these decisions.
Sometimes people are well aware of what their friend’s or relative’s decision may have been. But often they are not and have never had the conversation about what the person would want. What matters to people making these choices, and what happens if their first choice isn’t possible? A wide range of issues such as safety, companionship, independence, dignity, emotional attachment to places and people, even care of pets may be important but may not all be discussed. Do people living in remote and rural areas, where transport links may be poor, have different priorities compared to people living in cities?
We are planning a research project looking at the experiences of people who have had to make this decision, to understand what mattered to them and what would have helped. We plan to use these experiences to design and test ways to improve the discussion for each individual, perhaps by developing a structured set of topics to cover in the conversation.
Have you had to make the decision about going home versus going into a care home, for yourself or a friend or relative? If you’re in a care home has it changed your thinking about the advantages and disadvantages of care homes? Are you a member of health or social care staff who has helped people making choices about care?
If so, we’d love to hear from you. We’d like to know, for example:
- Does this sound like an important topic to you?
- Who do you think we need to talk to in our research?
- What issues do we need to be aware of?
- Are we missing anything important?
- What do you think might help people and their relatives when making decisions?
We also want to include members of the public as partners in our research team, so if you’d be interested in getting involved further, please let us know.
You can post comments on the blog below, or you can submit responses via email: email@example.com.
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Stephen Makin; Louise Locock; Angela Kydd; Fiona Kelly; Sarah Sivers; Andrew Maclaren
My Mum did not want to go into a care home. We didn't want it as a family either. She had lost the use of her arms and legs but still had all her mental facilities. However she was no longer safe and the carers who came to care for her 4 times a day were no longer enough.
I'd be interested in knowing more about how to start conversations about care homes with the person in need, as usually its done in a rush and like with our Mum following admission for pneumonia. The need to free up beds pressured us into finding somewhere suitable quickly. The role of all relatives is important in the conversation and the need to find somewhere that we felt mum would be cared for well. And oh the guilt of actually doing it was dreadful. I'd be happy to help more if needed.
Happy to discuss further. Gillian
I think this is an ideal research topic. Some of my thoughts as a care home manager:
1. One quick pee assessment visit from the home is not enough, there must be the opportunity to visit, to think of and ask questions. This is often hampered by social service pushing people out of hospital quickly.
2. There seems to be an idealism that families should look after their own but this is not always possible and adds to guilt felt by family members.
3. The image of care homes within communities must change so people are aware of the vibrant living space they can be. Care homes must be involved in their communities. Open doors hold less fear.
I have recently been diagnosed with Alzheimer disease. I am living with relatives at the moment - but realise that as the disease progresses (which is an unknown) I may need to be in an environment where I can be cared for: so this whole question is if vital importance. I have no idea how to approach the issue. I don't know who to talk to, what criteria to use or where to begin. I'm obviously aware of CQC reports - but an sceptical about their reliability. Part of me thinks I should start shopping around now whilst I am still compos mentis - part of me considers this nonsense.
I think this is a very important topic, and one I think of often as dad has had alzheimer's for 14 years. He is now 80. We care for him at home and will do this for as long as possible as we have a great support network.
That said, we have had to use care homes for short periods of respite in the past few years. Priorities & needs have differed as dad's condition has advanced. As a family we are strong advocates for dad and we understand what is important to him.
My husband and I however do not have children and when the need arises it would be great to have been able to have my preferences known, especially if I am unable to communicate at the time.
The below considerations/suggestions are taken from my personal experience of using various care homes for respite over the past 4 years.
How secure is the environment. (Dad's first stay he was out the fire exit within hours and then they told us they weren't set up for someone with his mobility).
The use of safety products such as sensor mats at the bedside if needed.
The ability to know what is needed & when. For example using side guards on a bed too early could cause issues, however leaving it too late can have catastrophic results.
At home dad is showered daily and is also now incontinent. I discovered some care homes only shower residents twice a week and anything over and above this needs to be requested. Also, how flexible can they be on the times (for example before his incontinence dad preferred to shower at night rather than the morning).
En-suite bathrooms - this is something I know will be important to me when the time comes and although most care homes we visited do have en-suite rooms, not all have this.
I may have difficulty expressing this, so please bear with me!
As Dad's main carer for the past 14 years mum has been very aware of changes in symptoms and involved either the memory clinic or our GP practice. Through discussions with friends in similar situations we have supported each other to recognise the difference between new dementia symptoms and a potential seperate illness.
It would be important for me to know that a care home could identify for example when something like Trazadone or Lorazepam is needed, but equally important that they know when it is no longer needed. When dad was in his angry, highly agitated stage, we needed these drugs, but also recognised when we could start to reduce them once this stage had passed.
This will come down to individual staff in facilities however one of the reasons we have used a specific care home a few times for respite is how the staff deal with the residents. Seeing people as individuals and understanding their needs is important.
The type of examples I have witnessed:
Anne likes to stay up the latest, so we take her to bed last
Marjory doesn't like Bridget to sit at her table for meals because she feels she talks too much
Brian prefers to look out the window during the day and watch TV at night
These are all little things I picked up on when spending time with dad in respite. It's difficult to quantify but I think the overall conclusion is the ability to understand and adapt to residents needs/preferences.
*Specialist knowledge specific to condition*
My only experience is with dementia and I am able to check that staff know how to deal with that but I would like to know that when my time comes I would be looked after in a place that understood my condition (whatever that may be).
Are residents encouraged to continue hobbies? Are they taken on day trips/outings? Are religious practices able to be continued?
Finally, I would not want to be in a facility where residents are sat in seats around the perimeter of the room all facing into the centre. It's horrible!
When asked why dad left (escaped out the fire exit the first night) - he said 'it was all old folk sitting staring at each other'!
I want to be in a facility that has a quiet space I can sit without feeling I'm in a goldfish bowl.
I hope this helps and happy to be contacted for any further information.
Happy to be involved as I am in the middle of this decision as a family member. In addition to the points made by others, financial implications also need to be considered. Not just simple affordability, but also the sense of failure and guilt that impacts individuals and spouses that they have worked hard to build a legacy for their family and now they need to spend it on themselves. This guilt is a huge barrier to accessing appropriate care and increases suffering.
Transition opportunities are also critical. As old fashioned 'day centres' have declined, would it be possible for care homes to offer group or individual activities to non-residents? This would allow familiarisation whilst that person has greater independence/capacity, builds relationships with staff and other residents in a more natural way and can progress to respite stays and full time residential care as required.
Thanks so much for all these really insightful comments so far, which will definitely help us shape the proposal. Seems it's a topic so many of us have struggled with.
Thanks also to those of you who have expressed interest in being contacted further to help.
Haven't made these decisions for anyone else but realise I'll need to make them for myself at some point. I've been mostly housebound and isolated for a decade already because of fibromyalgia and ME/CFS, which don't have much support or funding. My hope is that maybe my situation will improve as I age into more support.
A care home sounds better than being left on my own with someone to look in now and then. And if it's not, really best not to think about it too much.
Good luck with your research.
I would be more than happy to be involved in this research. I feel this an area that requires further attention and I am pleased this is being considered. I have personal and professional experience of having to make decisions around admission to care homes and not fully being aware of wishes of the person and what is important to them has made this a difficult decision, and on reflection, an ACP would not only proffer the opportunity for a person to plan their future but it would support POA's or Guardians emotionally with knowing the decision is one that takes into account the wishes of the person - huge decision and this would support the process greatly!!
Count me in :-)
This subject matter brings back huge memories ...my husband and I had effectively 1 day to make a decision about where his father could move to knowing we could not leave him in his own home without care. When you consider the time we spent deciding on a suitable nursery for our children it is quite shocking that we had to almost make a similar decision for leaving a relative in a care home but without any support or guidance..all w had to go on was gut feeling!
Having lost his mother, it quickly became apparent to my husband and I, that his father needed care. We knew within a couple of days of her passing that not only we were having to arrange and organise a funeral but we needed to get some help for my father-in-law. Initially we had tried to look at home help but the whole system was a logistical nightmare and we were against the clock...we lived 600miles away, my husband is an only child so there was no other immediate help and we had left our own 2 young children back home.
We literally scoured webpages and tried to make bookings to visit as many care homes (private and locally run council ones)..and visited 5 in one day. Hindsight is incredible because at the time we hadn't full considered what my father-in-laws exact needs were. It was a totally new experience!! We knew it needed to be respite in the first instance so that we could at least get home and have the time to really think about options - as well as allow us to continue preparing for a funeral (& grieving).
It was a tough tough day and emotionally exhausting and upsetting. Nothing really prepares you for it. As it happened we ended up choosing somewhere that we both had a gut feeling my father in law would like (better than the others!). It felt homely, wasn't too big, was in a house rather that purpose built and was close(ish) to his own home.
Time for us was the biggest problem and it would have been great to have had the headspace to think about what we wanted from a care home and whether there were any other options. Distance was the next issue...had we lived closer things would likely have been different. Then there's COST.....scary! And guilt .... it's hell...you are making such a massive decision about someones life.....knowing this could be where they spend the last of their days and they didn't have much of a say in that decision :-(
As it happens deep down we know it was the right decision..it wasn't the best...but it was the best under the circumstances.
At the time we almost drew up a checklist of all his needs (clinical and personal care, staff, comfort & surroundings ..& cost etc) and looked at the advantages and disadvantages of each care home but something formal like that would have helped I'm sure and some support for us in guiding or alleviating the guilt during and after the decision would have been hugely welcomed.
On Twitter I've been dismayed to be told that it was "immoral" to "put" my mum in a care home. In fact, she has spinal injury and my dad's terminal illness meant that nursing home care was the only option. The level of care she needs meant that very few homes were available to her. It's lonely for her because most other residents have dementia so activities and family visits are very important - of course these have been cancelled so we have been forced to rely on the kindness of carers who find time to chat to her.
Just to say again thank you so much for your really insightful and often moving comments. We are hoping to apply for funding next month, and will post an update here in due course.
UPDATE: I don't know if this will alert those of you who have previously posted replies, but just to let you know we are pleased to say we have funding for a PhD student, Lucy Halamova, to work on this topic. Lucy is currently completing a Masters in Research, and will start the PhD proper in 2023. We may get back in touch with those of you who expressed interest in continuing involvement.