When Should Someone With Dementia Go Into A Care Home?
Deciding when someone with dementia should go into a care home (if at all) is often a very difficult decision and there are many factors to consider.
My grandparents, both of whom were diagnosed with dementia, decided with the family to stay at home and have 24 hour live-in care. My grandfather still lives at home after my grandmother passed away over a year ago, but we often wonder if this is still the right place for him. With my mother-in-law also recently diagnosed with dementia and showing interest in moving into a care home, and with my experience from placing people directly from hospitals, I thought I would share our decision making process with you.
This article is going take you through my four key questions to consider when moving someone living with dementia into a care home:
- Do they want to move?
- Are they at risk at home? If so, can these risks be mitigated?
- Is it financially possible to move them into a care home (and one you’re all happy with)?
- What do they gain from moving into a care home?
Getting a Dementia Diagnosis
I feel that the first place to start is with understanding their dementia diagnosis and prognosis and how it is likely to affect their ability to care for themselves in the future.
Getting a dementia diagnosis is often not straight forward and takes time. Often the person concerned is reluctant to go to the GP which can be challenging, but this is the best place to go to get the ball in motion.
They can conduct tests to rule out other potential causes and make necessary referrals. Find out more about the process (and get the answers to other common dementia questions) in our article written with an Admiral nurse.
“Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning”. NHS, 2021
So now that you have got a diagnosis, it is important that you understand the type of dementia, and what their care needs could become in the future. By definition, dementia is a condition with ongoing decline meaning that it will get worse over time and because of this the persons needs will change.
Alzheimers UK have lots of information on this as do Age UK but you can also discuss with your parent’s GP or an Admiral nurse.
Living At Home With Dementia
One of the first things to consider when thinking about whether someone with dementia should go into a care home is how they are living at home.
Sometimes it will be obvious that there are serious safety risks with someone remaining at home. On the other hand, staying at home could be important to meet your loved one’s emotional needs. You need to weigh this up and most often, someone’s needs can be met at home providing they have the right support around them.
So it is worth understanding whether you are making the decision about moving someone with dementia into a home because you or they want to, or is it out of necessity?
Safety around the home and risks need to be identified. Here is a short lists of risks that should be considered. Are they at risk of:
- Wandering and getting lost
- Falling over and being unable to get help
- Setting fire to things (smokers / leaving gas on)
- Self neglect, not looking after themselves or letting others i.e. refusing care
- Challenging behaviour that can put themselves and others at risk
- Vulnerable to others, letting unknown people into their home / giving out bank details to scammers etc
- Social isolation and depression
Also I think one factor that is often forgotten (as it is not concerning the person directly) is carer burnout of a partner or family members.
If they are at risk or have evidence of these things happening, there are things you can try and put in place before needing to move home.
However if these risks have been managed at home and remain a serious risk then it may be necessary to move someone into care.
Care Plans for Dementia
A care plan for someone with dementia will ultimately be made by either the care home they move into or a community care provider.
But thinking about what should be in this care plan yourself will be a very useful step when considering when should someone with dementia go into a care home.
To do this you will need to understand the current care needs of the person. This includes their ability to carry out domestic activities of daily living such as cooking, cleaning, laundry, managing their diary, managing their finances etc.
Now look at their personal activities of daily living and decide which (if any) they need help with. These include: washing, grooming, getting dressed, toileting and incontinence, feeding themselves etc.
Next have a think about if the person has any specialist nursing needs. For instance: dressings, blood sugar monitoring, behavioural issues, uncontrolled pain, specialist feeding requirements.
By going through these things you will have a good idea of the level of care they require and what will be likely to be included in their dementia care plan in broad terms. This will help you to know where to start your search.
What Is The Difference Between A Care Home And A Nursing Home?
The major difference between a care home vs nursing home is that there are lots of different types of care home whereas a nursing home specialises in those with high dependency, specialist nursing needs and end of life care.
Here I will briefly explain the different types of care home in three broad categories depending on the level of care needs likely to be in their dementia plan at the point of moving in.
1) Independent Living Flats
Also often called retirement properties or warden controlled flats. These flats are usually set up with lift access, rails, sometimes adapted bathrooms to make life easier and future proof.
They almost always have an emergency alarm system and a warden to respond. Care is usually provided by external agencies. They can be a good option for those who have low care needs, are wanting to downsize or have lost a partner as they can provide social opportunities.
2) Assisted Living
Assisted living and residential care homes are able to meet most care needs in the dementia care plan but not nursing needs. They are often a larger room or a suite of rooms with a kitchenette.
Domestic tasks and meals are usually provided by onsite staff and there is usually someone on duty over night for the case of emergencies. These services are usually all paid as a service charge for the suite which can be bought or rented.
3) Nursing Care Homes
Nursing care homes support those with complex and nursing needs through to end of life. They promise 24 hour care and have nurses as well as carers on site. There will also be a GP attached to the home who will visit regularly.
Your parent will have their own room, and there will be communal areas for eating and socialising. Nursing homes often have a specific dementia floor and/or nursing floor where they can provide highly specialised care.
There are some complexes and retirement villages where they will have the full array of these different levels onsite. These often appeal to families and loved ones wanting to move earlier and then not have to move again – it gives them the comfort of knowing where they will be long-term and that they will be well cared for.
Costs of Care Homes
Here is where you need to decide what is possible financially and it may well be worth taking independent financial advice on your own individual situation.
Generally someone who has less than £23,250 of assets (including their home) will be entitled to a place in a state funded care home. Those with more than this will be expected to fund their own care.
There are however instances where someone could be eligible for Continuing Healthcare where the NHS will fund all their care, whatever their financial situation. Continuing Healthcare care is granted to those with complex nursing needs, and having a dementia diagnosis does not automatically make you eligible. We’ve written an in-depth analysis of Continuing Healthcare funding which helps to break it down for you.
If you’re looking at a privately funded care home I would suggest looking on the websites in the area you are thinking of. Many publicise their prices on their sites but when I started looking for my mother-in-law, I called a few up as well to understand it further and most were very open and helpful. Double check their rating with the Care Quality Commission too.
It’s also a good idea to look into the cost of a live-in carer by way of comparison – live-in care isn’t as expensive as you might think it is (especially if both parents need care).
Making The Decision To Move To A Care Home
It is important to consider who is making the decision when should someone with dementia go into a care home. It may be that the person who is potentially moving has a clear idea of what they want and has the capacity to choose which ultimately makes the whole process a lot easier.
If this is the case then they will be able to share their views, input into the decision and even look around the shortlisted care home to see if they like it.
However they will need others to help them make the final decision as they may not be able to fully understand all of the contributing factors for example, the financial impact.
This is where the role of power of attorney is important – your loved one’s trusted attorney(s) will be able to guide them and make the final decision on their behalf.
If they don’t have the capacity to decide then the decision will ultimately need to be made for them.
The power of attorney will need to be consulted in this decision or lead this decision depending on who is raising the concerns. Medical, health and social workers will also be able to offer support. Previous wishes and if they have a living will will need to be taken into account as well.
When making these big decisions, if it is at all possible then talk to them about what they want and how they see the future. Make sure you also discuss the risks and benefits for moving.
For example they may be closer to family members who can then visit more easily but further away from friends who are unable to travel such distances.
Location of the home will generally determine how easily and who can visit – but it can be tricky to negotiate between families, particularly those who are spread about geographically. Talk about what a home can offer in terms of social contact and activities but also how these needs could be met at home.
It’s also important to think whether this is a temporary or a permanent move. Respite in a care home option can make the decision so much easier. Not only is it a brilliant way to try your potential care home out, see how they are with your loved one and how your parent reacts, but it can make your parent feel more involved in the final decision.
In summary, there are lots of things to consider when deciding to move someone into a care home. It is often a balance between not wanting to take away independence or local support (if moving location) too early but also not wanting to watch your loved one struggle or reach crisis point.
When the timing is right, moving to a care home will be a positive move and can increase independence as they provide safe accessible environments and offer new opportunities with engaging activities for your parent to choose from.
I believe that those closest to the person and often the individual themselves are the best judge of when the time is right. I would also suggest doing some research earlier and having a good idea of what the options are to avoid any pressured decisions.
For some it is more about personality and long term wishes, some feel strongly that they want to remain at home and their wishes should be respected and as much support at home as possible should be put in place to help them achieve this.
There are however instances where they are not able to make the decision themselves anymore and it is a matter of safety. These are very difficult decisions where it is important to seek the advice of health professional and social workers.
A lot of care homes offer respite and these can be used as a way of a trial period to see how someone gets on and if they like it or not, so if you are struggling this can be a good tactic.
I hope that you have found this article useful, discussions like this can weigh you down and drag on so talk about it and do your research and both you and the person concerned will feel more empowered. Good luck!
Useful Information On Choosing A Care Home
Age UK Care Home Check List. This document gives you guidance in what to look for in a care home.
Paying For Care. Read more about the current UK guidance on paying for care.