Introduction to advanced dementia
The later stages of dementia are usually referred to ‘advanced’ or ‘severe’ dementia – but giving a clear definition of ‘advanced dementia’ is not straightforward.
A large number of measurement scales are now available in dementia care. Some of these do try to establish the overall severity (or how advanced the dementia is) for a particular individual, for example the Clinical Dementia Rating Scale (Morriss 1993) or the Global Deterioration Scale (Reisberg et al 1982). However, these scales vary and may still include quite a wide range of people with dementia – those who have some speech and may be able to walk and eat independently, as well as those who are unable to walk, talk or eat without assistance.
People with advanced dementia need social interaction as much as anyone else.Senior social worker
Added to this, there are a lot of differences among those living with advanced dementia. One person may have almost no speech left, but can move around a little on their own. Another may spend their time mainly in bed, needing help to move around, but be able to use single words or convey their meaning clearly in words.
One way for us to think about what advanced dementia looks like is to imagine it in terms of the level of need that the person has. That is, the more advanced dementia has become, the more help and support an individual will require in engaging in activities of daily living such as washing, eating, moving, communicating and so on. By the time a person is living with advanced dementia, they will have widespread and striking losses in what they can do, physically and cognitively.
Moving around: not or a lot?
Some people with advanced dementia are unable to walk, to stand up or to hold their weight (known as ‘weight bearing’). They may need help to make the most basic of movements such as shifting position on a chair or in bed.
Others in the later stages of the illness may move around a lot, perhaps even walking for large amounts of the day. This is often seen in care homes where more mobile individuals with advanced dementia may seem to spend their whole day walking up and down corridors and in and out of rooms.
The person may or may not appear to be ill at ease while walking – it’s important we spend time trying to establish this. Perhaps the person is trying to find something or someone. They may simply enjoy the sense of doing something purposeful like walking. This sort of constant walking can be stressful for care staff, family members and other residents, and there may or may not be risks associated with it. The key as ever is to establish the person’s needs – and work out how best to meet those needs.
Physical health and pain
There are many physical problems that commonly accompany advanced dementia and these can have an extremely negative impact on quality of life for the person with dementia and family carers. Skin problems, undetected infections (typically urinary tract infections), chewing, swallowing and breathing difficulties, marked weight loss and constipation are some of the most likely and distressing physical conditions that develop in the late stages of the illness (Mitchell et al 2004; Herr et al 2006).
These conditions can be the cause for a great deal of bodily pain, but because people with advanced dementia find it so much harder to communicate that they are in pain, it often goes unrecognised. Given this, it is so important that we get to know the person and pay attention to their non-verbal behaviour: their facial expressions, bodily movements and sounds. If the person is acting in a way that is different to their typical behaviour, we should first investigate the person’s physical comfort before making other assumptions.
For more on this issue, see the feature on ‘Pain in advanced dementia’ in the section on ‘End of life’).
Living in a different reality
Individuals with advanced dementia may appear to be so far removed from reality that they seem like they are living in their own world. For example, they may be completely silent and appear to be unresponsive to our attempts to communicate.
Others may still talk a lot, but in a way that is not easily understandable to us. For example they may produce noises that sound like words, repeat words over and over or speak in sentences that don’t seem to make any sense.
In turn, those with advanced dementia are also likely to experience extreme difficulty understanding what others are saying to them. As speech may no longer be usable or understandable for people at the later stages of the illness we may find that our attempts to talk to those we care for are unsuccessful.
Which skills are lost?
By the time a person is living with advanced stages of dementia, the illness has an impact on all areas of human ability: memory, communication, understanding, thinking, judgement, planning, learning and physical functioning are all severely compromised. As such, individuals with advanced dementia become increasingly reliant on others to initiate social engagement and occupation as well as all activities of daily living.
This dependency on others is commonly interpreted as signifying that not only do people with advanced dementia have nothing to contribute to the social world, but that they have actually lost the desire to communicate and participate in social interactions. This stage of dementia has even been referred to as a ‘social death’ (Sweeting and Gilhooly 1997).
These are serious claims and can lead to a damaging marginalisation of people with advanced dementia. Would we make similar claims about people who have difficulty in communicating due to learning disability, stroke or deafblindness? Would we make these claims about healthy babies who are yet to talk, walk or communicate in a way that we easily understand? The answer to these questions is undoubtedly ‘no’, but sadly this alienation of people with advanced dementia is commonplace in our society.
Which skills are retained?
Both research findings and the experiences of professional and family caregivers provide a great deal of evidence to suggest that people with advanced dementia do retain the desire to communicate with others (Ellis and Astell 2008). In fact, this urge is perhaps the most vital element of our humanity and may therefore be the last to leave us. However, the ways in which people with advanced dementia attempt to communicate and display their desire to interact may go unrecognised or misinterpreted.
Once again, we must consider that each person is an individual with different abilities and a unique life history. As such, it is important that we do our best to find out about how the person communicates, the sorts of things that they still like to do, and the person’s life history.
How can we help people with advanced dementia?
As with people at any stage of dementia, is it important that we focus on and facilitate the things that a person can still do rather than those skills that they have lost. We must value simple things (such as the ability to listen to music or the pleasure received through having a hand massage) and spend time working out what will work best to support the individual.
The particular challenge in supporting people with advanced dementia is how to facilitate communication. Improving interpersonal communication between people with dementia and their caregivers could improve the quality of life of people with dementia, as well as the job satisfaction of care staff (Woods 1999). In the feature on ‘Communication in advanced dementia’ we go into this in more detail.
The following passage describes an actual interaction that occurred in a care facility between Maria and a care worker. Maria has advanced dementia, and she does speak a bit, but it often doesn’t make sense. In this situation the care worker is attempting to wash the resident’s hair – but it’s a slow process.
Care worker: ‘Right. Put your head over. Put your head over. Just to get your hair washed.’
Maria: ‘No, I never put it in there. I didn’t like it in there. No, I didn’t.’
Care worker: ‘Come on. Put your head over.’
Maria: ‘Well wait a minute though and get the thing. ‘
Care worker: ‘That’s it.’
Maria: ‘Don’t envy anybody!’
Care worker: ‘I’ll just move you a bit closer to the sink. Will you put your head over?’
Care worker: ‘That’s it. Put your head over. Get your hair done.’
Maria: ‘Don’t put your…don’t put that other one in because.’
Care worker: ‘Put your head over.’
Maria: ‘I’m sorry about that.’
In this example, the care worker had a job to do – to wash Maria’s hair – and that the staff member was clearly focused on that. However, Maria did not seem to want to engage in the task. She has some difficulties with her words, and her meaning isn’t clear – apart from the fact that she doesn’t seem to want this hair-washing to happen.
In this type of situation it is easy to see how the care worker might become frustrated – the task is taking longer because Maria doesn’t seem to be following the instructions, and the worker is likely to be feeling under the pressure of time. It is very likely that Maria has misunderstood the situation or is unsure what exactly is happening.
It is easy to see how misunderstandings and frustrations can occur in such a task-driven situation with a person with advanced dementia. The challenge is to move away from task-based care to more meaningful engagement with people with advanced dementia – and in this section we will explore how to do that.
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- What the research says: Advanced dementia
Further reading Open
Burns, A. and Winblad, B. (2006) Severe dementia. Chichester: Wiley.
Ellis, M.P. and Astell, A.J. (2008) ‘Promoting communication with people with severe dementia’, in S. Zeedyk (ed) Techniques for promoting social engagement in individuals with communicative impairments. London: Jessica Kingsley Publishers.
Herr, K., Coyne, P.J., Key, T., Manworren, R., McCaffery, M., Merkel, S., Pelosi-Kelly, J. and Wild, L. (2006) ‘Pain assessment in the non-verbal patient: Position statement with clinical practice recommendations’, Pain Management Nursing, vol 7, no 2, pp 44–52.
Morriss J. (1993) ‘The CDR: Current version and scoring rules’, Neurology, vol 43, pp 2412–13.
Pace, V., Treloar, A. and Scott, S. (2011) Dementia: From advanced disease to bereavement. Oxford: Oxford University Press.
Reisberg, B., Ferris, S., de Leon M. and Crook, T. (1982) Global Deterioration Scale (GDS) for assessment of primary degenerative dementia. American Journal of Psychiatry, vol 139, pp 1136–39.
Sweeting, H. and Gilhooly, M. (1997) ‘Dementia and the phenomenon of social death’, Sociology of Health & Illness, vol 19, pp 93–117.
Woods, R.T. (1999) ‘Psychological ‘therapies’ in dementia’, in Woods, R.T. (ed) Psychological problems of ageing. Chichester: Wiley.
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