Living with advanced dementia
Given the nature of the illness, we can only guess what it might be like to live with advanced dementia. Some people with advanced dementia may appear to be completely unresponsive, but in fact we don’t know – they may or may not be aware of what is going on around them. And the person’s awareness may fluctuate from day to day or from hour to hour, too.
My mother spends most of the day alone in her room.Daughter of a person with advanced dementia who lives in a care home
The most important thing to remember is that people with advanced dementia are people first. There is no doubt that they have either already lost or are in the process of losing the ability to do many things, such as to walk, to remember and so on. However, people with advanced dementia are human beings who deserve our attention, empathy, compassion and care. In this feature, we try to step into the shoes of people with advanced dementia and to start to think about what everyday life might be like for them.
Most people would agree that it is frightening to not know where you are or who you are surrounded by or indeed living with. Strange sights, sounds, bodily sensations, environments, people and so on can all feel terribly threatening if we can’t identify them or work out what’s going on. Given this, it is very likely that people with advanced dementia experience feelings of fear and uncertainty on a regular basis.
There are many ways in which we can alleviate this anxiety in those we care for, for example through good design, watching noise levels or speaking calmly and clearly. One of the best ways is to simply ‘be’ with the person. It may be a huge comfort to the person just to know that there is someone else in the room.
The life of a person with advanced dementia can be a very lonely one. Communication becomes extremely difficult at this stage of the illness: it becomes increasingly difficult for others to understand what the person is attempting to get across. Often this leads to others withdrawing from attempting to communicate, as they may feel that they are not being listened to or understood (Lubinski 1995).
Without interaction with others, people with advanced dementia become less confident socially and increasingly remote (Kitwood 1990). Often, people with advanced dementia are only approached by care staff during mealtimes and sessions of personal care (Bowie and Mountain 1993). However, we must remember that the loss of speech does not mean that the person does not wish to or have some ability to communicate with others.
Entering the world of those we care for
Some people with advanced dementia may seem to be experiencing a different reality to ours. They may believe that they are living somewhere else or in another time. For example, an individual with advanced dementia who still has the ability to speak might tell you that they are late for school and that they are afraid that their mother will be angry with them.
This is an extremely tricky situation to be in as a care worker or a family care, as you might instinctively want to reassure the person, possibly by correcting them. However, it may lead the person to becoming even more confused if we tell them the time, year, where they are and so on when they firmly believe otherwise.
How should we deal with this sort of situation? What does it mean to be honest and truthful with people living with dementia – when they may appear to be living in a different reality? As the feature on ‘A different reality’ says, actually, there’s no simple answer, as both telling the truth and lying can cause distress. It may not be possible or beneficial to bring individuals with advanced dementia into our present day reality. In these situations, it’s better to respond to the person’s feelings and try to address their needs.
Responding to feelings
One approach which has had an important influence on dementia care is Validation Therapy. It was developed by Naomi Feil in the late 1960s as a means of communicating with older people and later was directed towards individuals with dementia in the 1980s (Neal and Briggs 2003). With this approach, caregivers do not attempt to orientate the person with dementia to the present reality; rather they attempt to enter into the world of the person with dementia. This validates the personal experience of the person with dementia, thereby valuing their emotions.
With this approach, all behaviour engaged in by people with dementia must be regarded as having a meaning behind it and the person cannot be forced to change their behaviour. Caregivers are also encouraged to accept each individual non-judgmentally and to view all people with dementia as valuable, no matter how impaired they are.
Feil reported that there were a number of benefits of validation for people with dementia, including improvements in speech, increased facial expression and communication with others and reduced need for the use of medication (1993). However, there is a lack of scientific evidence in support of its effectiveness (Day 1997; Neal and Briggs 2003). Furthermore, it could also be argued that in agreeing with the person’s reality we are merely humouring and, in so doing, marginalising them. This needn’t be the case.
There is still much to learn from this approach: it emphasises the importance of trying to understand what the person with advanced dementia is experiencing and of trying to see things from their viewpoint. By valuing an individual’s feelings and personal reality, we can start to work out what needs might lie behind those feelings – and how we might best meet those needs.
The physical experience
There are many physical problems that commonly accompany advanced dementia. Pressure sores, chewing, swallowing and breathing difficulties, marked weight loss and constipation are some of the most likely and distressing physical conditions that develop in the later stages of the illness (Mitchell et al 2004).
All of this is likely to mean that a range of people offer complex physical care – say nurses, care staff and family carers – and that the person’s care arrangements are complicated and time-consuming. It may also mean a number of professionals are involved in checking or advising on the physical care offered, for example an occupational therapist may give guidance about using a hoist or a dietitian may advise on swallowing. The complexity of a person’s physical health needs can make daily life very stressful for the person with dementia.
These physical health problems can be the cause for a great deal of bodily pain. Those who cannot move around independently tend to experience the most severe bodily pain. Although the experience of pain is very common in advanced dementia, it often goes unrecognised. This happens because individuals with advanced dementia are often unable to voice their experiences in a way that is easily understandable to us. As such, it is important that we get to know the person’s typical routines 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 how they might typically, we should investigate the person’s physical comfort before anything else. For more on this, see the feature on ‘Pain in advanced dementia’ in the section on ‘End of life’.
Here is Gordon’s story. Gordon is 87 years old and lives in a care home. He was never married, has no children and has outlived his immediate family members. He has no visitors. Gordon has very advanced dementia, is confined to bed and spends most of the day alone in his room. He no longer speaks but often makes loud noises as people pass his room.
Below, you will read two different perspectives: one is from the care staff, and the other is how we imagine Gordon’s experience might feel like from his perspective.
The perspective of care staff
The staff who work at the care home don’t know much about Gordon. He never gets any visitors so there is no opportunity to talk to any of his family members or to ask anything about him. Gordon often makes a loud noise when care staff walk past his room. It seems as though he is warning them not to enter, so they only go in when they really have to. Care staff come into Gordon’s room and speak to him at mealtimes and while they are helping him with personal care. He often hits out during personal care and the staff can find this very frightening and frustrating. They don’t think that Gordon understands what is being said to him as he never responds and it seems as though he is unaware of what is going on around him.
The perspective of Gordon
Each time Gordon wakes, he has no idea where he is. It’s as though he has found himself in a new and perplexing environment every time he opens his eyes. This is extremely frightening for Gordon and he often tries to shout for help when he sees someone walk past the door but the words don’t come out properly. No one comes when he calls. Sometimes strangers come into his room to give him food or move him around, which can be really painful for Gordon. They sometimes try to take his clothes off so he strikes out to make them stop. He doesn’t know who these people are. They seem to know his name but he doesn’t know why. He constantly feels confused, lonely and afraid.
The two perspectives are very different aren’t they? The point of this story is to realise that valuing the perspective of a person with advanced dementia – even if we are taking a ‘best guess’ – could help guide us as we offer them care and support. Often without realising, care teams can develop set views on particular individuals, but this sort of exercise can help us think again and offer a fresh approach.
Access and download additional resources
Further reading Open
Bowie, P. and Mountain, G. (1993) ‘Using direct observation to record the behaviour of long-stay patients with dementia’, International Journal of Geriatric Psychiatry, vol 8, pp 857–64.
Day, C.R. (1997) Validation Therapy: a review of the literature. Journal of Gerontological Nursing, vol 23, no 4, pp 29–34.
Feil, N. (1993) The validation breakthrough. Baltimore, MD: Health Professions Press.
Kitwood, T. (1990) ‘The dialectics of dementia: With particular references to Alzheimer’s disease’, Ageing and Society, vol 10, pp 177–96.
Lubinski, R. (Ed.) (1995) Dementia and communication. San Diego: Singular.
Mitchell, S.L., Kiely, D.K. and Hamel, M. (2004) ‘Dying with advanced dementia in the nursing home’, Archives of Internal Medicine, vol 164, no 3, pp 321–26.
Neal, M. and Briggs M. (2003) ‘Validation therapy for dementia’. Cochrane Database Systematic Review 3 CD001294.
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