What can caregivers offer?
A person who is living with advanced dementia faces an enormously challenging and emotional time. Family carers may feel an overwhelming sense of loss, and it might seem impossible to connect with the person in a way that we both understand. Care staff may feel rushed with tasks they must complete and find it difficult to offer the sort of calm, one-to-one time needed to support a person with advanced dementia.
If she is approached in the right way, my mum loves to interact.Daughter of a person with advanced dementia
And yet, despite these enormous challenges, there is much that we can all do to support people living with advanced dementia.
Being with the person
People with advanced dementia never lose the urge to communicate and be part of the social world, even though they generally experience great difficulty communicating with words. Care staff and family carers need to use their full range of communication skills, including non-verbal ones, to nurture and respond well to people with advanced dementia.
We must learn to listen carefully and to pay attention to the non-verbal communication of a person with advanced dementia, such as their bodily movements, facial expressions, sounds and so on. This sort of quiet observation and listening is only possible if we’re prepared to just be with the person, to sit alongside them. This may well involve saying nothing or saying very little.
For care staff, it can be particularly challenging to find the necessary time to follow the slow and often confusing communication of a person with advanced dementia. In all of this, remaining calm is essential. If you feel yourself becoming impatient or agitated with the situation you are in, take a break.
The example below gives some suggestions for interacting with a woman called Betty who has advanced dementia. She no longer talks and is confined to bed. Think through the description of this situation and suggestions below:
- Once you have entered Betty’s room you could pull up a chair by the bed and sit down so that you are at eye level with her. You might then use gentle touch such as stroking her hair or holding her hand to comfort her.
- Take care to look out for non-verbal signs (such as smiles) that suggest she is happy for this to happen as touch may be uncomfortable for her. If Betty becomes unhappy and perhaps pushes your hand away, try not to be put off being with her. She may not want to hold your hand, but she may still be comforted by your presence in the room.
- You may be able to find other ways of communicating with Betty simply by using trial-and-error. You might try playing her favourite music to her or showing her some photographs – anything has the potential to create a spark.
- Try not to ask her questions. If she is unable to answer you this might provoke feelings of frustration in her. Just remember to take things slowly and to look out for her reactions.
The point of this example is to show that sometimes the best way to connect with a person with advanced dementia is to simply sit with them quietly – no materials or prompts are required for this activity!
Value meaningful moments
Graham Stokes and Tracey Hillier have written about the importance of these sorts of ‘meaningful moments’ with people with advanced dementia (2012). They say that very short exchanges (say even a minute or a few minutes) with people with advanced dementia can be extremely important and should be actively encouraged. The activity or ‘moment’ will vary according to the individual, but are characterised by a desire for connection with the individual, based on (for example) their life history and interests. They do not depend on verbal communication in order to offer a moment that has significance to that person. A ‘meaningful moment’ may involve listening to a piece of music while sitting alongside a person with advanced dementia, gazing out a window together or doing any of the things suggested later on in this feature.
Dignity in advanced dementia care
Maintaining the dignity of people with advanced dementia needn’t be a difficult thing to achieve if we remember what is known as the ‘Golden Rule’: you should treat other people as you would like to be treated yourself.
Even though the person we care for doesn’t seem to be listening or paying attention to what is going on around them, we must care for them as though they are. This maintains their status as a valued human being and further encourages others around the person to treat them as such.
We all want to be treated with respect and this is not a luxury that should be reserved only for healthy people. There are lots of seemingly small ways we can achieve this with the individuals with dementia that we care for. Here are a few examples of how this can be achieved:
- speak to the person rather than about them
- address the person by name
- validate their existence and experience
- close the bedroom/bathroom door during personal care
- tell the person what you’re about to do in terms of personal care
- find out about the person’s likes and dislikes and their life history
- explore different ways of communicating with the person
- be gentle and softly spoken
- avoid discussing the person’s care with a colleague/family member in their presence.
Caregivers can find that they are doing more and more for the person they care for – and in doing so lose track of some things that the person might be able to continue to do for themself.
Take the example of mealtimes. For care staff, it may save a lot of time at mealtimes to sit beside an individual with advanced dementia and help them with lifting the food and drink to their mouth. It might also feel like you are helping the person and perhaps preventing their frustration at the difficulties they meet in eating independently.
However, you may also have noticed that sometimes helping a person with advanced dementia to eat can be stressful. You might meet with resistance and distraction and the person may appear to be upset or angry. This upset may be due to the fact that the person is not being given the opportunity to eat on their own. This may be something they can still do, given enough time and the right kind of support.
Spend time working out what the person is capable of doing with minimal help, and involve a few caregivers or family members to try out a range of activities over a period of time to see what the person with advanced dementia can and still wants to do. It may involve being much more flexible about time or roles. Share ideas with each other as to how you can help the person to keep doing as much as possible. This will provide you with a greater knowledge of those you care for and will encourage your friends and/or colleagues to work together in caregiving.
The support of extended family and friends
We know that families often report loss of friends over the course of the illness (Alzheimer’s Society 2013). And yet, ongoing support and visits from extended family and friends for the person with advanced dementia – whether at home or while living in a care home – is important to for several reasons.
Firstly, although the person may not seem to know who we are, they may experience a sense of familiarity or recognition there that they are unable to voice. They might also be comforted simply by having someone at their side, paying attention to them.
Secondly, visiting a family member or friend with advanced dementia will also remind main family caregivers that they are not alone and that they have the backing and care of their extended family and friends. This feeling of support is important for close relatives of people with advanced dementia as they can often feel isolated.
Finally, the more often care staff see different people visiting individuals with advanced dementia, the more likely they are to continue to view the person as a communicating and important individual, and to be able to learn important life history about that person.
Ideas for sensory stimulation
There are ways that we can feel connected to the person and let them know that they are not alone – even when the person has limited or no verbal communication. Various types of sensory stimulation can prompt feelings and memories. The person with advanced dementia will probably not be able to put these into words, but you may experience and feel them together as you sit alongside and support the person in the here and now – perhaps through a few shared tears or a smile, or a small grip of the hand.
The sense of smell is very powerful. Scents and smells can create a link and bring back reassuring memories of times gone by (for example, the aroma of baked bread or a favourite perfume or flowers). Having these close by can produce a reaction and a connection.
Holding hands, stroking a person’s face or arms, or brushing their hair can be soothing and be pivotal in making a connection. A woman may like the feel of a silk scarf on her neck.
A family photograph or a picture of a favourite view can produce a reaction – perhaps encouraging the person to open their eyes and reach out.
Dancing and movement
Depending on the person’s mobility, they may or may not connect though dancing. Perhaps they will get up and move around or put their arms in a familiar dance hold or move their feet to the rhythm of the music.
Softly playing the music that the person loves in the background may provide a comfort for everyone. Music can unearth memories from the past that may elicit powerful emotions in us.
Connections can be made through art by the simple sensory act of holding a brush or pencil and scribbling, painting or drawing on paper.
For more on these sorts of ideas, see the feature on ‘Activity in the later stages’ in the ‘Keeping active and occupied’ section, which includes more detailed suggestions of activities for people with advanced dementia.
Access and download additional resources
Further reading Open
Alzheimer’s Society (2013) Dementia 2013: The hidden voice of loneliness. London: Alzheimer’s Society.
Hall, J. (2013) Dementia essentials: How to guide a loved one through Alzheimer’s or dementia and provide the best care. Random House.
Stokes, G. and Hillier, T. (2012) ‘Meaningful moments’, Journal of Dementia Care, vol 20, no 6, pp 27–29.
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to supporting a person with advanced dementia, such as The later stages of dementia(417) and The progression of Alzheimer's disease and other dementias(458)
The healthtalk 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 one section on ‘Deterioration: severe dementia’, which includes six carers each describing their experience of supporting their loved one in advanced dementia.
Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which it promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.
Oxleas Advanced Dementia Service: Supporting carers and building resilience
This 2013 resource from The King’s Fund describes how health and social care services in one local area are working together to support people living with advanced dementia in the community.
Supporting people in the advanced stages of dementia
This 2013 workbook from Skills for Care is intended to guide managers in what sorts of knowledge and skills care staff need when supporting people living with advanced dementia. The resource covers a wide range of topics, such as the importance of activity, moving away from a task-based care culture, reminiscence and reflective learning, and includes case studies, top tips and links to supporting resources.
Related pages from this section Open