Supporting carers of people with advanced dementia
The importance of good support in the later stages
Family or friends caring for a person with advanced dementia are in the later stages of a long and difficult journey: they need the support of care staff more than ever. And whether you work in the person's own home or in a care home, you are taking part in a very important time in the life of this family. How you behave, your kindness, respect and skill will be something that is remembered forever by the family.
This feature sets out some of the key challenges for carers at this stage of the dementia journey - whether the person with dementia is living at home or in a care home - and shares some ideas for the kind of support care staff can offer. The section on 'End of life care for people with dementia' includes a feature on 'Carers' needs' and it may be that this is of interest too.
my sister saw our mother as a person, whilst I saw her as a non-person, a mere shadow of someone who had died years before... (If I could have seen her)... as the person that she still was, this would have enabled me to play my part more fully, visit her more often and also relieve the pressure on my sister.Neville Chamberlain, Bishop of Brechin in the foreword to ‘In a strange land’ by Malcolm Goldsmith (2004)
Physical care in advanced dementia
In advanced dementia the person becomes less and less able - eventually completely unable - to care for themselves.
They may have been incontinent for some time but they may now also be immobile, and unable to move from their chair or bed. They may have needed help with eating and drinking before, but as time goes by even swallowing and chewing may be difficult. They will lose weight and muscles will waste away. They may be in pain, but have difficulty saying this.
They may become agitated and distressed, perhaps because they are in pain or because of frustration with not being able to communicate.
As a care worker, you can show your skills in this area, and teach some of them to family carers. Helping a person with advanced dementia to eat takes a great deal of skill and patience, for example, and it may be that if a family carer sees the way you are tackling it, they can take some ideas from you.
It is very stressful for carers to watch their loved one's physical needs increase considerably, or to see them be distressed or uncomfortable. The physical care that you give to the person with dementia should be a source of confidence and comfort to carers, as they learn new caring skills and cope with painful feelings.
Communication in advanced dementia
The person with advanced dementia still communicates with us, but it may well be in ways that are increasingly subtle or confusing and often non-verbal. Listen carefully to the person with dementia. Speak clearly and use body contact to communicate. It is good sometimes just to sit in silence and hold hands. Music can play a key part in reaching a person with dementia in the later stages and be a great source of comfort and calming. A radio playing favourite music quietly beside the bed can be soothing for the visitor as well as the person with dementia.
It is important to know that the person with dementia may muddle the present with the past, and may say things that are upsetting or untrue. The relative may be familiar with this, but it is important for you to help them understand that you know this and you respect the person but you will not always take literally what is said.
In the film 'Memory Bridge', the well-known dementia expert Naomi Feil gives a wonderful demonstration of good communication with a person with advanced dementia. You can look at an extract from the file here.
The wider care team in advanced dementia
Care staff are part of a much bigger multidisciplinary team, involving GPs, nurses, social workers and many others. As a care worker, you have an important role to play in communicating with this multidisciplinary team.
This could mean reporting problems or concerns as they arise, for example, you or your manager contacting an occupational therapist to report that a hoist sling doesn't seem to be offering the person enough support. In a care home, this might mean asking the social work team to review a resident's placement if their needs seem to be changing.
It also means being proactive and flexible in sorting out solutions (say, chasing up a response from a professional or changing the time of your visit to coincide with a visit from another professional). This sort of support can be vital to carers, who may get tired of dealing with such a large number of professionals.
Listen to carers
Be prepared simply to listen to and learn from the carer. A daughter may say something like, 'I just know when our mother is unhappy - I can tell from the way she holds her shoulders...'. Barbara Pointon, the carer and dementia campaigner, says that she was able to recognise signs of when her husband Malcolm, who had dementia, was in pain - his ears went red (Easton and Thompsell 2012). It is carers who will have this sort of vital information, so specific to the individual's needs and nature.
Encourage carers to make clear their preferences about how caring tasks are carried out - remembering again that they know the person best, and often will know the best ways to tackle problems that arise. The carer may want to work alongside you in providing the care, so welcome this if this is their wish.
By listening to the carer, you can also provide them with companionship and sympathy with whatever thoughts they are having.
The Social Care TV video, 'Providing care at home for people with dementia', raises some important issues to do with the complexity but also the satisfaction of working closely alongside carers, particularly in the later stages of the illness.
Practical and emotional support
There are many things that care staff and families can do that will almost certainly comfort the person with dementia. You can have an important role in encouraging carers to do these things.
Perhaps the carer could gently rub the person's feet or hands with nicely perfumed lotion, or just stop and sit and hold their hand. They might stroke or brush their hair. They might sing to them or read out a story or poem, even if the person seems not to be listening. Having some fresh flowers to see and touch, bringing in a bit of 'nature' from outside, or a soft toy or pet to stroke are simple things a relative might do with your support and encouragement.
For many people, maintaining connections with their religion and faith are vital throughout their life. Listening to sacred music or the tape of a church service may give the comfort of familiarity even when the person is unable to go out to worship.
Carers can help keep the links with a local religious community going, perhaps by asking friends from the church or mosque to visit or by making an audio recording of the services.
Perhaps the carer does these sorts of things already but would be glad to hear some fresh ideas. See the feature on 'Activity in the later stages' in the 'Keeping active and occupied' section: this has lots of good suggestions for gentle activities with a person in the advanced stages of dementia.
Carers looking after themselves
If a carer is going to be able to keep going in their caring role, it is vital that they take care of themself too. Again, care staff can have a role here in encouraging a carer to be careful about this and to get as much support as possible. This may mean asking for more formal support services - an increase in home care support or respite care, or more regular contact with a district nurse. Or it may mean support to be able to continue with lifelong interests, such as music or dancing.
The Alzheimer's Society factsheet, 'Carers: Looking after yourself' (523) has some ideas for ways in which carers can continue to look after themselves.
By the advanced stage the person with dementia may appear to have little or no understanding of language and be unable to speak. This can be particularly difficult if a decision has to be made, for example, about whether to move into a care home.
Although we have law and policy to guide decision making with people with dementia (see the section on 'Making decisions'), coming to a consensus is not always easy, particularly when family members may disagree with one another and with the person with dementia. If the person with dementia makes plans in advance for what they want to happen in terms of their care and welfare in the later stages of the illness - possible with advance care planning - this can be a great comfort to carers. Ensure the family carer has sound advice and a chance to talk through all the options with a competent and caring person. An independent advocate might help if the situation is a complex one.
Access and download additional resources
Further reading Open
The Alzheimer’s Society produce a wide range of factsheets, and several relate to issues in advanced dementia: ‘The later stages of dementia’ (417), ‘Grief and bereavement’ (507), ‘Carers: looking after yourself’ (523) and ‘Advance decision’ (463).
Easton, N. and Thompsell, A. (2012) ‘Recognising and assessing pain in people with dementia’, Journal of Dementia Care, vol 20, no 2, pp 24–25.
Goldsmith, M. (2004) In a strange land: people with dementia and the local church. Southwell, Notts: 4M Publications.
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 deterioration and severe dementia. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.
‘Memory bridge’ film: an extract from this film featuring Naomi Feil is available to view.Social Care TV: ‘Rapidly declining early onset dementia: living at home with nursing support’
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