Supporting carers of people with dementia in hospital and care homes
Carers and the move to a hospital
People with dementia often go into hospital after falls or infections as well as for acute medical or surgical problems. Mostly, carers say that hospital 'makes the dementia worse' and that the hospital staff do not offer good dementia care. We also know that people with dementia get 'stuck' in hospital. Their hospital stay ends up being longer than it would be for another person without dementia and at least a third never go home, but end up in a care home (Alzheimer's Society, 2009 and CQC, 2013).
Rightly, care homes put a lot of effort into making the transition as comfortable as possible for the person with dementia. But family carers need help too – guilt, loss, sadness, worry – all the negative emotions you can think of just well up at this time.Pete Watson, a member of Uniting Carers
Carers have a vital part to play in supporting their loved ones during a hospital admission. And the care team needs to be flexible to make this happen: it might mean allowing a carer to visit outside of rigid visiting times, encouraging them to help with meal times, and most of all, listening to what they tell you about the patient, and making sure all the team does the same.
While a hospital admission offers the potential for respite, the carer is unlikely to benefit if the hospital admission is a highly stressful episode. Some carers feel that hospital staff push them aside and undo all their careful, loving work in the course of a few days or even one bad night. The best hope for the person with dementia in hospital is if there is a carer from the outside world, their own world, who is listened to by staff. Avoiding a hospital admission is best, but if it happens, we can make it easier for carers and more beneficial for the person with dementia by at least, doing no harm.
Sharing information with carers
Sometimes carers feel that they give out information endlessly about the patient or resident, but they are not given information in return. This is bound to give rise to resentment. This will be increased if they see their loved one suffering from boredom or looking lost and distraught. At the very least, you need to let the carer know that you are interested in their feelings and aware of what those feelings must be like and tell them as much as possible about what is going on.
Hospital workers in particular are very concerned about confidentiality. Giving general information about a person with dementia who is in a caring relationship with a relative is a relatively low risk. Carers say that sometimes the staff treat information about the person with dementia as if it is top secret only to protect themselves.
Information needs to pass in two directions. Keep a clear record of important information about the patient so that other staff can use it when the carers are not about. The Alzheimer's Society has produced a standard form to be used in exactly these situations, called 'This is me'. It can be downloaded from its website. The sorts of questions that are good to cover are: What does the person like to eat and drink? What do they liked to be called? What makes them contented, and what are they most afraid of or irritated by? Who or what do they love: a person, a pet, perhaps a football team? You must ask the patient what they want, but if they are upset and unable to answer, an answer from the carer is the best you can do and often will be just as good.
If the patient's first language is not English and there are no staff on the ward who speak their language, then make sure the relative writes down key words or phrases in their own language which you can use.
Over the past few years, Barbara Hodkinson has launched and developed the Butterfly Scheme, a simple system delivering a targeted care response by discreetly identifying people with dementia in hospital (if they elect to opt in to the scheme), so that all care staff can offer the best possible care to that person, and as a result the carer's stress can be significantly reduced. The scheme involves training for staff and using a 'carer sheet' to set out the individual's care needs and situation.
Carers and the move to a care home
Family members may have different feelings about the idea of their relative living in a care home. Conflict within the family can upset the person with dementia. It is not much good for the family either if individual members feel that the wrong decision was made. Remember that the person with dementia may still be able to express a view and needs to be heard.
Sometimes the carer or the person with dementia, or both, do not recognise that the person's needs can't be handled safely at home or that the person could benefit from more social engagement and activity that a good care home can offer. It may be that there is not enough quality, stable community support available from health and social services. Or it may be that after an acute hospital admission the person with dementia has deteriorated so that no one can imagine them being able to be cared for at home any more. This can cause conflict and distress.
If the carer does want this move, they will often describe how awful the last months or years have been and how they are suffering in their own health. They need to be respected by each one of the staff involved in 'taking over' the care, and they need to be kept involved as much as they would like.
A new role for the carer in care homes
Don't assume the carer's role and burden decreases when the person goes into a care home. They might find some things more difficult, for example making the journey to visit their loved one or juggling finances. The family carer may feel pushed to the sideline as staff focus on the tasks involved in looking after the resident.
Care workers need to behave as if the care home contract was not just about the named person with dementia – it should also say 'and their carer and family'. Caring for the carer is part of the job, and also makes the job easier as a whole, so it is well worth doing. It can be hard for a carer to watch staff do things that they have done for a long time, perhaps over years working out the best way to tackle particular problems. If the carer doesn't feel satisfied with how things are being done, this will cause them more stress at an already difficult time. Remember how it feels when you watch someone else do things that you know about and they are not doing it 'properly'. It is uncomfortable both for you and the person being watched. At these times open communication is essential. The carer needs to have confidence in the capacity of the care workers.
Because the transition is usually not planned, it is even more devastating for the carer. They might feel some relief, but on the other hand they may feel sad and helpless. Care staff must do everything they can to be sympathetic. Listening is really important and reassurance. Don't get upset if carers seem picky or critical – remember how devastated they may be feeling at losing the person they love to the care of others.
It is worth remembering that – until this sort of situation arises – most of us have never been inside a care home. Explain clearly how things work at the care home, for example explain about visiting, mealtimes, and activities, and what role family members and friends can take in the life of the home. Ask for the carer's help in bringing in personal items to decorate the person's room, for their advice on the person's likes and dislikes, and guidance about what the person does as part of their normal routine.
Many family carers feel bereft when the person goes to a home and they still wish to be part of the care team. Make sure relatives know they can be there to assist with a relaxing bath, perhaps, or at a meal time and that a 'partnership' in the care arrangement is what you want to achieve.
Visiting a care home as a relative can be intimidating – you don't know the routines, the other residents or the staff and there often seems to be no privacy for a quiet moment with your friend or relative. Ensure there is time and space for intimate and private time for a couple to share together where they won't be disturbed. If the locality of the home is unfamiliar, tell the relative about local places of interest that are easy to reach and enjoy – such as a café or garden centre – so that it is easier for them to take their person out of the home.
Encourage one of the carers to start a carers group (if there isn't one already), where all the carers who feel like it could get together to support each other and perhaps work together for the home – fundraising or organising outings are often popular. Also they can share their concerns, and come to staff together if there is something that really does need to be fixed.
When carers are difficult
Some carers can place particular demands on the care team: perhaps they are constantly critical of the care, or turn up late at night expecting to visit. They might come to the home drunk, or be racist to and about staff. Anyone who has worked with the general public will recognise that these situations do arise from time to time.
In these situations, support from the management team is critical to help the team develop a consistent approach to this particular individual or family. The solution will obviously depend on the presenting problem, but it's important that all the team support one another in responding to and coping with these sorts of difficulties.
Problems related to moving to a new environment
If a person with dementia who is new to a hospital or care home starts showing some disturbed behaviour, the carer is the best person to ask for their advice and comment. It is really important to ask, 'Is this usual for this person?'
All behaviour is communication, and you need to know what the person is trying to tell you. Who is better to translate for you than the person who has been caring for them for years? The person with dementia might be trying to say 'Where am I?' or 'Let me go home?' or 'I need the toilet!' or 'Please, I'm frightened, can we walk up and down until I feel more calm?' Once you know what the behaviour means, you are in a good position to respond to it helpfully.
Information about moving to a care home that can help carers
Carers need support and advice as they make this really important decision. National voluntary organisations, such as Independent Age and Age UK, can give carers advice on how to choose a care home and produce a wide range of information resources on this topic.
Local organisations, such as local branches of Age UK, also offer support and information on looking for a care home. Age UK South Lakeland, for example, will provide advice to local people, based on local knowledge, on finance, including entitlements, differences between residential and nursing homes, and help carers have a better understanding of the choices and options for long-term care and what the legal obligations of the statutory agencies are. They can also act alongside the carer, speaking on their behalf, but with the carer in control. There may be a local service like this near you.
In the Social Care TV video 'Living in a care home: a positive outcome for a person with dementia', a daughter Sandra shares her experience of watching her mother move into a care home.
Access and download additional resources
Further reading Open
Age UK (2012) ‘Finding care home accommodation’, Factsheet 29. London: Age UK.
Alzheimer’s Society (2009) Counting the cost, London: Alzheimer’s Society.
Care Quality Commission (2013) ‘Care update’, Issue 2 (March 2013), Newcastle-upon-Tyne: CQC.
Christie, J. and Cunningham, C. (2009) Caring for people with dementia in acute care settings, Stirling: Dementia Services Development Centre, University of Stirling.
Counsel and Care (2012) Care home handbook, London: Counsel and Care.
Heath, H., Sturdy, D. and Wilcock, G. (2010) Improving quality of care for people with dementia in general hospitals, London: RCN Publishing.
Healthtalkonline website: This website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including arranging residential care and becoming a resident. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.
My Home Life: this project aims to improve the quality of life of those who are living, dying, visiting and working in care homes for older people. It produces valuable resources, a regular newsletter, and offers opportunities for learning and sharing with others in the sector.
Social Care TV: ‘Living in a care home: a positive outcome for a person with dementia’.
Useful links Open
A guide to psychosocial interventions in early stages of dementia
The British Psychological Society worked with people living with dementia to produce this resource aimed at people newly diagnosed with dementia. The 2014 guide reviews a wide range of interventions (such as reminiscence, music therapy and assistive technology) and explains what each one involves, who it is aimed at, how to access it and what the evidence is for its efficacy.
Carers UK is the lead campaigning organisation for carers in the UK. This website has national and local information about services and support available to carers, and issues related to caring.
Carers’ Call to Action
The Carers’ Call to Action was launched in November 2013 as part of the work of the Dementia Action Alliance: it is calling for individuals and organisations to sign up in support of greater acknowledgement and involvement of carers of people living with dementia.
This website was launched in 2014 and is aimed at family carers of people living with dementia. It includes around 100 short video interviews with carers talking about how they have developed ways of coping with everyday problems. The videos are grouped into four sections: 'Understanding dementia', 'Daily life', 'My relationship', and 'Looking after myself', and presented alongside other online resources on the topic.
This website has been developed by and for carers of people with dementia as a way of highlighting online resources that may be helpful for carers of people with dementia. It includes personal stories, listings of helpful websites and explanations of where to go for help and support.
This directory of over 3,500 dementia support services is run by the Alzheimer’s Society and is aimed at anyone affected by dementia in England, Wales and Northern Ireland. The directory search function asks for a postcode and then lists basic information about nearby voluntary, statutory and private services.
The charity Dementia UK promotes and develops Admiral Nursing nationally. Admiral Nurses are specialist mental health nurses who focus on the needs of carers and families of people with dementia, but they are currently only available in limited parts of the UK (see Dementia UK’s website to find out where). The charity runs a national telephone and email helpline, Admiral Nursing DIRECT, staffed by Admiral Nurses and available for anyone affected by dementia, including professionals. Its website includes a long list of ‘Common questions we get asked’ with helpful answers, such as ‘We’ve been told dad has dementia – now what?’.
Talking Point is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition. It is hosted by the Alzheimer’s Society and supported by a group of volunteer moderators. It includes a forum for people under the age of 65 who have dementia, and their carers, and a forum for gay and lesbian carers.
This is me
This is a leaflet developed by the Alzheimer’s Society for people with dementia. It was originally developed for people with dementia who were going into hospital, but it has been broadened to be suitable for any person with dementia who is receiving professional care in any setting. The leaflet can be filled in by the person with dementia or a family member, and it covers things such as preferences, likes, dislikes, interests and other information to help a person cope in an unfamiliar environment. The Scottish Government and Alzheimer Scotland have launched a similar form, Getting to know me.
TIDE: Together in dementia everyday
This is a new national involvement network for family carers of people with dementia, which aims to involve carers in supporting other carers, influencing policy and improving local services. The network will offer a development programme designed by carers to pass on skills and confidence to other carers.
Triangle of Care – carers included: a guide to best practice for dementia care
The Carers Trust and The Royal College of Nursing (RCN) have produced this guide for care services on involving family carers in the care of people with dementia.
Related pages from this section Open