Patricia
These problems restricted her mobility. Combined with a poor diet and a lifetime of heavy smoking, they placed her at high risk of arterial disease. She suffered numerous strokes that severely affected her physical health, eventually becoming bed-bound, incontinent and dependent on assistance for all activities of daily living.
This also increasingly affected her ability to both understand what had been said to her and to communicate back to people in a way they could understand. This is frustrating for both her and the carers at the nursing home.
She increasingly found that the effort to communicate was too much for her, partly because the time put aside for social interaction with the staff was limited by the rolling routine of physical care and everyone always seemed in a rush. She has become much more isolated and withdrawn.
Relatives began to visit much less frequently because it is so difficult to hold any kind of conversation – or even to get any signs of recognition or pleasure. When she was more communicative Patricia expressed a desire to remain in her sparsely decorated room rather than spend time in communal areas and this remains the pattern of her day.
Patricia shows little interest in a small television left switched on in the corner of the room and now spends more time looking at the ceiling or shouting out.
The shouting is distressing and seems to express discomfort, anxiety and a need for attention.
If staff go to help, however, Patricia does not appear to know why she is shouting. No physical cause for the behaviour could be ascertained by staff or by visiting medical practitioners.
Patricia now often resists being changed when her incontinence pad is soiled, resulting in her spending long amounts of time in the pad. Antidepressants to help her mood do not appear to help and a trial use of sedatives simply made her more agitated or very drowsy.
Carers are becoming increasingly despondent at their apparent inability to help Patricia. Working with her has become increasingly stressful and she is sometimes openly discussed as ‘a difficult patient’ between carers offering support to each other.
Patricia represents a case study of someone moving towards living with the later stages of dementia, which in most people is the product of the interaction of strokes, lifestyle factors and Alzheimer’s or other syndromes.
Most formal carers and some informal carers will have had the experience of working with people in the very late and most saddening stages of dementia, where verbal communication often disappears altogether and where communication of any kind may seem virtually impossible in the face of an apathetic or depressed silence, broken only by restlessness, shouting and distressed or resistive behaviours.
It is a state that people in early stage dementia like Jack (with his experience of his mother’s late stage dementia) fear most.
At the moment the medical profession has little in its armoury that is genuinely helpful in the context of later stage dementia: we can use drugs to prolong life but we can do little to improve its quality through, say, increasing insight. On the other hand, drugs and other treatments can also be used to help with the physical problems that are frequently associated with this stage of dementia, like problems with bowels or pressure sores.
Attempts can be and frequently are made to reduce anxiety or depression, as they have been with Patricia.
They may help in some instances but they can also do more harm than good, and the use of anti-psychotic drugs in particular often (arguably) owes more to everyone involved wanting to feel they are doing something helpful (or to a less laudable desire to reduce and manage ‘difficult’ behaviour) than to a real contribution to the welfare of the person being treated.
Applications for DemTalk
How does DemTak apply in this context, where apathy and/or depression and cognitive loss make communication so difficult? Can it be at all helpful?
What DemTalk tries to bring to everyone with experience of working with people living with the later stages of dementia is a sense of their personhood and of our shared need to do all we can to respect, preserve and cherish a sense of everyone as an individual.
It used to be (and perhaps still too often is) common practice for the ill-informed to refer to people in the later stages of dementia as being ‘like babies’ or even as ‘vegetables’.
These are twisted, grotesque and unhelpful caricatures of reality. Babies have not lived long and meaningful lives, or experienced the range of terrifying losses associated with later stage dementia. Vegetables do not feel pain, depression or the desire and ability to find some way – any way – of expressing these emotions.
Better analogies would be to say that people with later stage dementia are like people in prison or people dying with clouded consciousness, retaining their human rights, needing our contact, entitled to our respect and love.
We owe it to ourselves, too, to treat people in prison or who are dying and unable to respond with respect: it diminishes us as human beings not to do all we can to retain dignity and decency as frameworks, not to retreat into indifference or mechanical performance of care tasks.
To have held the hand of a person as they die will, one hopes, be a comfort to them. However distressing it may be it is no less a comfort and an affirmation of humanity for ourselves, as carers, friends or family.
Some elements of DemTalk may be applicable to Patricia’s illness as it stands but may be less so if her illness progresses, though none are without use.
For example, while conversation as such may be difficult to impossible, listening skills are clearly necessary when people are able to formulate sentences that we may be able to decode or help people reformulate. They are less useful when people living with later stage dementia are unable to formulate sentences or even words – but in the broadest sense their usefulness remains.
What is causing Patricia to shout, for example? Is it an expression of anxiety or loneliness indicating that whatever her previous desire to stay alone in her room she now needs human contact? Is it an attempt to communicate pain or anguish or a desire simply to express these feelings, which should be respected and responded to?
Most components of the toolkit still have some usefulness. Consideration of the environment is clearly important.
For example, Patricia may have moved to a stage where she now needs something more than the comfort of isolation in her room that she chose some time ago. She might move later to a stage where the television turned on in the corner becomes an irritating and bewildering distraction – some people come to truly want peace and quiet.
Alternatively she and we might find that she responds with delight to the kind sensorily stimulating environment provided by ‘snoozelum’ equipment – flashing lights, tactile experiences, etc. – or to something as simple as a leisurely warm bath.
There is also much to be said for involving people living with the later stages of dementia in the preparation of meals. Even people who can no longer help to peel a potato or dry a plate may respond with pleasure to the familiar activities, smells and noises associated with cooking.
In the context of people living with later stage dementia, beyond the simple but absolutely necessary recognition of a person as a person, the two elements of the toolkit likely to prove most helpful are body language and trying to help her keep a sense of self.
A clear focus on the possibilities and possible problems of body language become more and more important if people are having increasing problems with language.
Some researchers have found the use of flashcards helpful in reaching through to people living with late stage dementia.
The simple act of hugging someone or of holding their hand can be of immense comfort to people who have little apparent ability to communicate left – a very real reinforcement of personhood. Similarly, think about how we approach individuals when we are going to sit down with them – or how to carry out a necessary care task like changing a soiled pad.
Just as people living with early stage dementia may need carefully-paced speaking from a carer, and extra time to come up with responses, so people living with later stage dementia will need time to appreciate what the carer’s approaches to them may mean – or what their intentions are.
Imagine how it might feel if you were having problems with communication, bewildered and frightened in a residential or hospital environment. Further imagine that a nurse or carer comes up to you in a whirlwind rush and begins removing your clothing with at best a perfunctory (and incomprehensible) explanation. It would be no surprise to find yourself lashing out indignantly.
If, however, you are approached by someone who sits with you and takes some time to reassure you, through touch and through communicating their own calm and helpful intentions it would clearly be a less distressing experience. Tone of voice perhaps becomes really important.
This kind of approach shows that carers recognise that people even in the later stages of dementia may be able to appreciate and occasionally respond to a continuing, soothing verbal explanation of what tasks are being carried out and why.
It may help to keep self-respect and a sense of control, through co-operation (or resistance, which should be respected too!). Anything that stops people who are living with later stage dementia feeling as if they are being treated as things being done to (as part of a sausage machine of care practices) restores dignity, prevents depression and gives some quality of life.
An inspiring example of the allowance of agentive response and reinforcement of personhood and identity in the context of later stage dementia was given to the authors by a well known psycho-geriatrician.
She was living with early stage dementia herself, and understood the possible progress of her illness. She told us about one of the first self-help groups for people living with dementia, a group that had got together in the United States and to which she had been a regular visitor as a supportive medical practitioner long before her own illness and diagnosis.
She had visited the group over a lengthy period and had watched the energetic founder member of the group slip through stages of dementia that meant he found it increasingly difficult to communicate.
Finally, he was unable to speak. Other group members gradually, tactfully and unobtrusively took over the duties of the founder member on the basis of an unspoken mutual understanding. Their founder member remained their founder member, however, and a figure of respect, whose involvement they still wanted.
They kept it by beginning each meeting by handing him a book of poetry, which he would open. They would read the poem on the page, thank him and open their meeting. He had kept an important role.
