Thinking about arranging a move to a care home for someone living with dementia can be a distressing experience. You may feel guilty about no longer being able to care for that person yourself anymore. You may acutely feel the sense of separation, and knowing that other people will now be caring for your loved one. When you may have lived with that person for a life-time, this can be very difficult.
So it is easy to see why you may be pushing the whole idea to the back of your mind, and struggle on yourself until, one day, the decision has become inevitable, and you have no choice. Your loved one may have had an accident, or put themselves and others in some danger. Now the decision becomes urgent and you have to make a decision quickly, before you have had a chance to properly consider the options. This may well be the most important decision that you make at this time of your life and ideally you want to take time to make sure that you make the right decision.
It pays to consider the option of moving to a care home early rather than later. That will give you enough time to properly consider a number of homes and select the one that best meets the needs of your loved one and yourself. We hope that this report will help you to explore the options fully and help you to plan for the right decision..
Does my loved one have a dementia ? Memory loss is a typical first sign of dementia, and too often people dismiss this as an inevitable sign of old age. But this is not true, and if you find that memory is getting worse or you notice other symptoms such as confusion or disorientation, then it is really important to get a professional diagnosis. This is important because the symptoms of early stage dementia can be relieved with medication. There are other conditions that may give similar symptoms, such as a urine infection, and a proper diagnosis will first eliminate these.
The first point of contact will typically be your GP – ask for a proper diagnosis and ask about medication that can help relieve the symptoms of early stage dementia. The diagnosis may indicate the type of dementia (there are many) and this can help set some expectations about how the condition may progress. The Government has agreed a national dementia strategy (for more information see here:
An important part of that strategy is to improve information about and diagnosis of dementia. So always insist on a full diagnosis – you are entitled to it.
Try before you buy
Day care and Respite care can be a really good way to introduce the idea of living in a care home, both for you and for your loved one. This means your loved one stays at a home for a few days to a few weeks. That can give both of you a break, and you can both get used to the idea. You may be pleasantly surprised at how well it works and that you can still care for your loved one while being relieved of the burden of 24 hour care.
About ‘being independent at home’
One of the reasons that some people postpone a move into a care home, is so they can maintain their independence. The interesting thing is that, in a good care home, residents can actually be much more independent than they can be at home. This many seem odd, but a good dementia care home offers a specialist and therapeutic environment and employ staff with specialist training in how to support people in the various stages of dementia, This really helps people to live with their dementia in a relative state of independence and well-being. A good dementia care home organises a range of relaxing, stimulating, and meaningful activities that you simply cannot organise at home. How about a choir, or a pub quiz, or how about gardening in purpose-built raised beds ? Specialist equipment such as adapted baths, lifts, and electrical hoists are simply too expensive and cumbersome to provide in one’s own home. And being part of a safe and supportive community where everyone is fully accepted for the person that they are now can be much more rewarding than being isolated at home, particularly for people living on their own.
So life can be much better at a specialist dementia care home, providing that you select the right home. And when you want to plan early, here are some of the questions you can ask yourself and the homes that you view.
Finding care homes to view
When you have decided that you want to consider a move to a care home, it pays to ask yourself some basic questions to narrow down the search.
What is a good location for a care home ?
The person moving to a care home may well feel an attachment to a particular location, and this location may not be where they live at the moment. Short time memory can be affected by dementia so they may actually feel a much stronger connection to another place, and a connection with this place may help that person transition into life at the care home, particularly in the early stages of dementia (the strong connection with a place tends to get weaker in the later stages).
Another very important consideration is the inclination and ability of friends and family to visit. Life can be very confusing for someone with dementia, and the comfort and joy of being around familiar faces cannot be underestimated. The person with dementia may not fully recognise a close relative or may get them confused with someone else (for example confusing a wife with a daughter) – yet the mere recognition of ‘a familiar face’ can be hugely uplifting and provide comfort. So sometimes proximity to close friends and family is the most important consideration.
Our own experience shows that people who have regular contact with close relatives maintain a much greater sense of well-being. While professional carers provide comfort support and even friendship, they can never replace the familiarity of close relatives and friends. This is because long term memory tends to stay intact better than short term memory and so people with dementia may not recognise the faces of professional carers even when they see them every day.
What are the different types of care homes ?
Care homes fall into two broad categories, residential homes and nursing homes. Or, to use the official jargon, Care homes without nursing care, and care homes with nursing care.
The main difference is that residential homes (care homes without nursing) make use of the NHS district nursing team for any required nursing care. This works just fine when the nursing needs are occasional, though when daily nursing is required, a nursing home may be more appropriate. Because nursing homes need nurses on duty 24 hours a day, residential homes generally have much lower fees than nursing homes. If you are privately funded then you have a great deal of freedom in choosing between the two types of homes. If the placement is state-funded then the decision is made by Social Services or the NHS, and they will do a formal assessment to determine which type of home is most appropriate.
In practice the difference between the two types of homes is quite fuzzy, in particular in dementia care, and open to considerable judgement.
Deciding between Specialist dementia care homes and mixed homes ?
Specialist dementia care homes cater specifically for people with dementia. Mixed homes cater for people with dementia as well as people without a dementia. Choosing between these two types of homes is a very important decision. A ‘mixed’ home may initially seem more attractive for someone in the early stages of dementia and the opportunity to mix with people without dementia may appeal. In reality, most mixed home only support people in the early stages of their dementia and so another move is almost inevitable, which can cause additional trauma and a ‘set-back’ for the person at a very vulnerable stage of their life. Sometimes in a mixed home people with dementia can feel separated from the other residents. A specialist dementia home has the advantage that another move is much less likely, and also everyone is accepted as they are, and as they will be as the dementia progresses.
Where do I find information about care homes ?
Like so many things, the best information about care homes is on the web, and it pays to do some research there, or ask a friend to do it for you. There are a number of specialist care home directories that provide basic information about care homes. Here are some of most used web-sites:
Alternatively you can type your requirement into Google and this will bring up some relevant web-sites. For example type “Dementia Care Home Exmouth” if you are looking for a dementia care home in Exmouth.
You can also find information on the website of the Care Quality Commission, who are responsible for inspecting care homes. On their site you will also find ‘star ratings’ for all care homes, and their latest inspection report for each home. Their website gives information about the type of home (with nursing or without nursing) and what categories of care are supported. So you can find out if they are specialist homes or mixed homes. The categories to look out for are :
- Dementia (also sometimes referred to as EMI – Elderly Mentally Infirm)
- Mental Health. These are so-called functional mental challenges other than dementia, for example depression or paranoia.
- Learning disabilities.
- Old age, not falling within any other category
- Physical disability.
For mixed homes, you will see both the ‘Dementia’ and the ‘Old age, not falling within any other category’ categories listed. These homes tend to support only the early stages of dementia.
Your GP can also refer you to a Social Services Care Manager who will have a list of suitable local homes. Social Services are not allowed to recommend any particular home, though they may be able to narrow down the search for you a little. The final decision is yours though.
What is a star rating by Care Quality Commission ?
The Care Quality commission is responsible for inspecting all care homes, and they assign a star rating to each home following an inspection:
0 stars Poor service
1 star Adequate service
2 star Good Service
3 star Excellent Service.
In Devon there are no specialist dementia care homes with 3 stars (all 3-star homes mix people with dementia and people without dementia and most only support people in the early stages of dementia) and very few specialist dementia care homes with 2 stars. Why should this be so ? We think this reflects the challenges of providing really good dementia care, and also the fact that the standards are very general – there are no specific standards for dementia care.
While star ratings are important, you do need to take them with a pinch of salt for a number of reasons.
Care homes are inspected by people, and people make subjective judgements. Two inspectors inspecting the same home on the same day might well arrive at a different conclusion particularly if the home is ‘borderline’ between two ratings.
Most of the rating is determined by what happened on the day of the inspection – perhaps the home had a really good day or a really bad day ?
Many months or even years may have passed since the last rating. Strangely enough this is a particularly problem with 3-star homes as they are only inspected once every three years. Much can happen in 3 years! Good homes are inspected every two years, and adequate homes every year.
In other words tar ratings are no guarantee for the quality or otherwise of any one care home and so it is important to make up your own mind about the quality or suitability of any particular care home. The best way to do this is to visit the home, with your loved one if possible, to talk with residents and their friends and family, to ask lots of questions, and use their respite service to ‘try before you buy’.
Where can I find the inspection reports for a care home ?
You can find these on the website of the Care Quality Commission: http://www.cqc.org.uk/registeredservicesdirectory/rsquicksearch.asp
Like star ratings, it is important to take the inspection reports with a pinch of salt. Inspection reports can tend to focus excessively on resident’s exposure to various risks, rather than highlight those practices that improve resident’s wellbeing.
Having said that, an inspection report may well give you some good questions to ask when you visit the home; Have a look to see the name of the home’s manager at the time of inspection, and check with the home if this manager is still there (the information on the CQC website may well be out of date). A new manager can make a vast difference to a care home, in positive and negative ways, in a matter of weeks. Also check when the report was written – the older the report the more likely it is to be out of date and possibly irrelevant.
What is the role of Social Services ?
Social Services have a pivotal role in most state-funded placements in care homes. Their role is to ensure that the needs of the potential resident are assessed and to determine the type of care that they will fund (residential or nursing, and the category (Old age, Dementia, Learning disability, Mental Health etc). In Devon, assessments are typically undertaken in an assessment centre such as St John’s in Exmouth, or in some cases in hospital following an acute admission (for example after a serious fall). The key person for you to know is the Care Manager and it is important to know their name and stay in close touch with them as they can guide you through the process. This may include consultation with the person’s GP and a Community Psychiatric Nurse (CPN) or Psychiatry consultant.
A word of warning: Once a person is in hospital or an assessment centre, you may feel under some pressure to find a suitable placement and you may not have much time to find the right home. It really pays to start looking at care homes early – well before the situation becomes urgent.
If your placement is private, then social services may or many not be involved (it’s up to you), and you have more choice about the type of home you would prefer, for example you may feel more comfortable with a nursing home, whereas Social Services might only fund residential care.
Your Social Services Care Manager can give you a list of local care homes that may be appropriate and this can be a good starting point for looking around possible homes.