Tag: dementia

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There is always someone behind Dementia

Dementia

The following is an extract from ‘The Dementia Whisperer’ by Agnes B. Juhasz, which looks at the importance of a ‘person-centred’ approach in dementia care and how to understand the person hidden behind the condition of dementia.

There is a personality in every single human being, an absolutely unique code and pattern built up over a lifetime, and the way to understanding the person hidden behind the condition of dementia must not be blocked by obstacles such as language differences, communication problems, short-term memory loss or other physical and mental causes. This is the fundamental aim of the person-centred
care model I have always used – to help overcome these obstacles while finding out what the person with dementia really needs and what he or she really want. That is why the person must be taken into account first, before the disease.

I cannot emphasise too strongly the importance of the person-centred approach in dementia care. Taking each affected person as an individual, carers must start to learn their life history, habits, hobbies, fears, things they are proud of and all the tiny elements that make them happy or sad. They must get to know the subjective world of dementia, the world of the forever ‘I don’t know’. Carers must try to make contact with the personality that is hidden behind the barricades and search for an indirect connection while constantly checking on the physical needs of each person in their care, ensuring their comfort and doing their best to make them feel at home and safe. It is not good enough only to hear what people with dementia say; carers must let the words reach their innermost minds, if not their souls, if they really want to understand what dementia sufferers are trying to communicate.

Efforts to make a connection with a person with this condition will be much more effective if these guiding principles are kept in mind. In this way, carers can build up a kind of ‘special manual’ that quickly provides the answers to questions about the whys of seemingly odd or
annoying behaviour patterns.

If somebody desperately wants to go ‘home’, insisting that where they are is not the place where they belong, such behaviour can be
understood as communicating the fact that they do not feel safe or comfortable at that moment for a variety of reasons, and that they want
to go somewhere where they will feel reassured.

If the individual keeps saying they must go to work, even though they have been retired for years, it can mean they yearn to be useful and
busy again, and are feeling bored, worthless and useless.

If a person with dementia is looking for a wife or husband who died years earlier, it might highlight an individual’s lack of company and
need for emotional support.

Speaking this unique ‘language’ helps carers not only to understand different situations but means that they can also be the rock on which these people can rely and trust.

During my time working with Sylvia, I have noticed that it has become an involuntary habit of mine to speak to her more slowly and with more articulation than I usually do with other people. She speaks clearly and deliberately, perhaps because of her background in languages, and at first I think I copied her, which incidentally was very good for my English. Now, I believe that my speaking slowly has the added benefit of giving her the chance to think during the conversation and the time to find and select the right words to express as clearly as possible what she really means or wants to say. I also always take care to eliminate every possible barrier or extraneous noise from our verbal connection.

When Sylvia is watching TV, she usually has the volume up high because of her hearing impairment. Although she has got hearing aids, she prefers not to wear them at home, especially when she is watching television, as they make not only the speech but also the background noise far too loud. Naturally there are moments when she wants to say something during a Poirot or Miss Marple episode, and I always automatically turn the volume down immediately to get rid of a very disturbing communication barrier.

In verbal communication I have learnt never to switch topics quickly as people suffering from dementia are unable to follow quick changes of idea. If I have asked a question and I realise that Sylvia’s response has nothing to do with the question asked, or she says something totally incoherent, I try to rephrase what I have just asked or said, and that usually solves the problem.

[…]

Reminiscence therapy is a crucial part of dementia care work. This person-centred approach concentrates on the personal life history and
the most pleasant memories and occasions of the life of a person with the condition. Recalling personal experiences and skills that the person used to have, while showing a lot of love and interest, provides very strong support to the current mental state so that the mind can function at its maximum. If a person’s mental and emotional states are well balanced, they have a positive effect on the person’s physical health too.

‘The Dementia Whisperer’ by Agnes B. Juhasz is based around real-life stories and provides insights into what she has found works and does not work, and candidly reveals her own emotions of frustration, irritation and – sometimes – amusement, and how she has learnt to cope with these.

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Ending lockdown for people with dementia and their carers

Blog post written by Mary Jordan, author of ‘The Essential Carer’s Guide’ and ‘The Essential Carer’s Guide to Dementia’.

 

If lockdown has been hard for many people, then emerging from lockdown may cause its own problems! Many have been made so afraid of infection that they have refrained from taking steps back into society again even when this was allowed. I have clients who tell me that they have not left their home for over a year. Many are really afraid to visit their GP (even when they can get an appointment) or to go to the hospital for important outpatient appointments. Some have avoided dental checks or eyesight appointments.

Carers know instinctively that routine is good for those with dementia – they find it easier to cope when there is a set pattern to the day and more difficult to cope when their routine is upset. This past year has disrupted many lives. Routines of social interaction have been interrupted and disturbed. Familiar visitors have stopped visiting. Family have kept their distance. Even those of us who are able to understand the reasoning behind the disrupted routines have been disturbed and depressed – how much more difficult for those unable to understand what is happening?

I have found it quite disconcerting when people have told me that they have become ‘used to’ staying at home and are reluctant to go out and meet others because I know that meeting up with other people, talking, touching and mixing are very important for those with dementia. Perhaps it is easy to forget how vital such activities are for carers too.

The Cognitive Stimulation Therapy groups that I run have been able to continue (under Covid-secure guidelines) since September and people have been very grateful for this, but the Dementia Café has not been allowed to run and carers have told me that they really missed this facility. It seems that the simple chance to meet along with the person they are caring for, in an informal social setting was considered by many to be a lifeline.

Now, hopefully things are changing again and we can once more meet up with family, friends and supporters.  I feel it is important to embrace this new ‘opening up’ of society both for people with dementia and for their carers. But perhaps we should also take note of the fact that life can change suddenly and unexpectedly and that things can happen that are beyond our control. We cannot plan for every contingency but we can all remain open to considering change and accepting the need to adapt – and this is particularly true when caring for someone with dementia.

 

‘Solutions in Dementia’ by Mary Jordan (due in 2022) addresses the many occasions of dramatic change that can happen as dementia progresses and highlights some solutions that have been found helpful.

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Trying to provide the best environment for someone with dementia in the present crisis: the three ‘Ss’

Dementia

It’s a difficult time for all of us – and particularly so for anyone with dementia. We are all being urged to stay at home and people in care homes are no longer allowed even to see visitors. How can those of us caring for people with dementia provide an environment that gives them the best experience in these circumstances?

First, it is important that the environment is supportive. Life does not always run smoothly and those of us who still have plentiful cognitive reserves learn to cope with that fact. We can acknowledge the need to limit our social contacts and our outings in the present circumstances. We can accept that we may feel anxious, bored and annoyed and we all hope to ‘come out the other side’ when life resumes its normal path.. Someone who has little cognitive reserve, for whom even following a routine is difficult, will find any change or complication doubly difficult. People with dementia need support. They need support from those around them and it is doubly important that those they rely on for support continue to give calm and consistent care.

As much as possible carers should keep to the habitual routine. There is no need to force the person with dementia to stay indoors, for example. If the rest of us are allowed outdoor exercise then so are they. ‘Social distancing’ can easily be maintained simply by walking in quieter areas or gently directing the person you care for in the right direction.

Secondly, the environment should feel safe. Note that I am not saying here that the environment should be safe but that it should feel safe to the person with dementia. Naturally, we should aim for a clean home environment – but becoming over-protective about touching surfaces or cleaning areas is not going to help someone with dementia to feel more safe and secure. It is more likely to cause extra stress as they cannot understand the need for such precautions. And bear in mind that most people with dementia confronted with a person wearing a mask and gloves are likely to feel terrified rather than safe.

Thirdly, the preferred environment for people with dementia should be stimulating to the senses and provide an opportunity for social interaction. Now that day centres and dementia cafes have been forced to close many carers are finding it quite challenging to provide activities for people with dementia and even more challenging to provide social interaction.

The fact is that without stimulation any of us may become bored and doze off. How often has this happened to you whilst watching a boring TV programme? People with dementia are frequently bored because many of the occupations with which they passed the time previously are now closed to them. Boredom can lead to difficult behaviour and restlessness, but often it just results in sleepiness. Simple tasks can be enjoyed – think sorting books by size, pairing socks, ‘tidying’ shelves, dusting and polishing. And remember that an impaired memory can be an advantage. If you ask someone to dust a piece of furniture more than once they are unlikely to remember that they have just completed the task. Outdoor jobs like watering plants, raking up leaves, and carrying trimmings to the compost heap combine fresh air and exercise as well as passing the time and ‘tidying the shed’ can occupy a good few hours even if the result doesn’t live up to the job description! Watching visitors to a bird table can be absorbing and this can be done through a window if the weather is not so good.

Providing social interaction is more challenging. Today we are being urged to use technology and social media to keep in touch with others but this is not an acceptable alternative for people with dementia who progressively lose the ability to work even simple devices such as a remote control. Many people with a cognitive difficulty will also be unable to associate screen pictures with the ‘real thing’ and may even find them frightening.

Telephone calls are often still acceptable as this is a method of communication that is still familiar so ask your relatives and friends to use the telephone to make contact.

You can also talk to neighbours ‘over the fence’ or whilst keeping an acceptable distance on a walk. Carers from care agencies are still allowed to visit to provide personal care or companionship if this is necessary so don’t cancel your regular care and remember to give them tips about chatting to the one you care for.

Blog post written by Mary Jordan, author of The Essential Carer’s Guide to Dementia. 

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The ‘D’ Word: Rethinking Dementia

When the brain is affected by dementia, logical thinking and reasoning ability are affected quite early on. However, the amygdala – the part of the brain that is the integrative centre for emotions, emotional behaviour, and motivation – is less affected. People with dementia (PwD) who have trouble processing logic and reasoning do not have a similar problem with their ability to feel emotion. Indeed, as far as research can show, people with dementia still feel happy, sad, afraid and so on, even after they can no longer speak or recognise people they know well, even when they need total support to live their lives. It seems, though, that most people – including many well-meaning carers – are unable to adjust their own behaviour and thinking to accommodate the continuance of emotional experience, along with the decrease in reasoning ability of the person they care for.

If someone has a broken leg we do not assume that they could walk on it ‘if they tried’. We do not suggest that they listen very carefully whilst we explain how to walk. We do not try to divert their attention so that they can walk without thinking. No. Instead we set the broken bone and maintain it in position with support (a leg-plaster). We allow them to rest the leg. We give them a crutch to aid movement and we accept that walking will be slow and difficult until the leg is healed. Similarly, if someone has part of their brain which is not functioning we should make allowances. We should try to keep the parts of the brain that do function in as good order as possible – by encouraging social interaction, physical exercise and general health. We should allow the brain to ‘rest’ when it needs to by not demanding actions which are no longer essential. We should supply a ‘crutch’ using memory aids, providing unobtrusive help and support. We accept that everything cannot be as it once was because this brain is not what it once was.

It is important, though, that society should recognise the relative importance of the emotions which come to predominate when logical thought and thought processing are deteriorating. Society in general does not much like domination by the emotions. ‘Civilised’ people should learn to control emotion and apply logic and reason to manage their everyday life, it is thought. But what if we can no longer use our logic and reasoning to help us come to terms with emotions? Suppose we are unable to understand and work out why we feel sad or happy? Imagine if we feel these emotions overwhelmingly, but we are unable to deal with them by a change of scene, by talking through our feelings, by taking actions to alleviate the misery or express the happiness. Imagine being no longer able to speak coherently enough to tell anyone how frightened you feel or how angry. What might you do? How might you try to express yourself? Perhaps you would try to hide somewhere, or to run away and escape. Or you might shout and get angry. Perhaps if no one made any effort to understand, you might try to use physical methods to show them how you feel.

This blog is taken from The ‘D’ Word: Rethinking Dementia by Mary Jordan and Dr Noel Collins

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Understanding a brain with dementia

How the brain works, a very logical and straightforward article produced by Alzheimer’s Australia, gives a clear and basic introduction to the brain dysfunction involved in dementia and always helps me to picture what is going on inside of the head of someone affected by this disease. The article explains that the brain can be thought of as a factory and that the factory runs at peak efficiency when all the parts are working.

At the front of this factory (the frontal lobes) are the directors. They make plans for the factory and decide on who is going to do what and when. As things get underway they get feedback or other information as to how well things are going and they make judgements on what looks good and what does not look so good. Then they make further decisions, to change that or to keep this, and show their appreciation and annoyance. Planning, organising, judging, decision-making and appreciation therefore take place at the front of the brain.

In the middle of the factory (the parietal association cortex) are the managers. Each manager runs his/her own department. The left side is the talking side: there is a speech department that moves the throat, tongue and lip muscles, a language department that is responsible for finding the words you want and knowing the words’ meaning, a music department, and various other departments. The right side is the picture side, with a motor department that helps you find your way around a building, knows where you are when you are driving a car, puts your arm through the sleeve of your coat, and so on.

The directors pass their plans on to the managers, and the managers make sure the directors’ plans are carried out. In order to do this, directors and managers communicate freely with one another, sending messages back and forth.

At the bottom of the factory (the limbic region, amygdala and basal ganglia) are the workers. They do not know what the directors’ plans are, but they know their job and they do that same job day in, day out. They take care of things like appetite control, the need for water, staying alert and awake or going to sleep, as well as basic emotions, such as turning on tears, making the face red and increasing the pulse rate.

When brain damage occurs, basically someone gets sacked. It can be the director, a manager or a worker, depending on where the damage takes place. Someone can also go on temporary leave of absence – for example, when there is a temporary swelling or loss of blood supply in the brain that is reversed in a short time.

The result of any injury, whether permanent or temporary, is that the efficiency of the factory is reduced. Messages are sent but are not picked up. Directors get annoyed. The managers get tired and the emotional workers get overwrought. Confusion reigns.

Understanding who has been fired and who is still on the job can help in interpreting the behaviour of people living with dementia.

This blog is taken from The Dementia Whisperer: Scenes from the frontline of caring by Agnes B Juhasz.

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Discussing dementia with Jeremy Hunt, Secretary of State for Health

Since I began working with a national dementia charity nine years ago there have been many improvements to the level of support that people living with dementia (by which I mean both those with a diagnosis and their families and carers) receive. It is now rare for me to meet someone who has struggled for months to get a diagnosis. More GPs are aware of the signs and symptoms and people are more likely to be referred for memory assessment. When I met Jeremy Hunt he explained that he had been campaigning for earlier diagnosis knowing that this can make it easier for people to get the help and support they need. We discussed what still needed to be done for those affected by dementia.

It seems to me that the most important thing now is to get society in general to accept those with dementia and to keep them integrated in the company they know and enjoy. Day centres, Dementia cafés and other specialist services like musical memory groups all serve a useful function and are popular -until recently I ran a very well attended and popular dementia café myself – but our real aim should be to make it possible for people with dementia to continue to go to the social groups, clubs and events which were part of their life before diagnosis.

Some things are already being done. In many places, in Britain there is a huge campaign to make businesses, shops, and public areas ‘dementia friendly’.  The ‘Dementia friends’ campaign by Alzheimer’s Society has also had a big impact in terms of making people generally aware of the difficulties experienced by those with dementia trying to function in everyday life. These are all good initiatives. But acceptance is the key. The above initiatives make people aware of dementia and they may make people more willing to help when they see someone having difficulties but do they make people with dementia more accepted?

Dementia is a problem for all of society but this is still little recognised. Most public places are now ‘accessible’ in terms of physical disability with level paths, ramps for wheeled access, better signage, bigger parking spaces and so on. We should now consider making changes to improve accessibility for those with the cognitive disability. Such changes might include material factors such as better street signs, clear demarcation of different areas and well defined entrances and exits but they should also include the vital human factor. People with dementia need support from other humans. Assistive technology can be helpful in a limited way but social interaction is what slows the slide into helplessness. Just as the public have been educated to recognise the rights and needs of those with a physical disability, so the rights and needs of those with a cognitive disability need now to be addressed in our neighbourhoods and our public places and by all of us in our local communities.

Mary Jordan is an expert in dementia care and works for a national dementia charity. Her books The Essential Carer’s Guide to Dementia and The Essential Guide to Avoiding Dementia offer invaluable insights into the condition and how to care for those with the condition.

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Caring for Loved Ones with Alzheimer’s and Dementia

When dementia takes hold you need outside support because, as people get worse, they cannot be left alone for any length of time and the carer needs to share the burden with others.

When it comes to dementia you cannot ‘go it alone’. It doesn’t matter whether you are independent and used to managing your own affairs, that you’re ‘not a sociable person’ or are used to ‘keeping yourselves to yourselves’. You as a couple (carer and person with dementia) may pride yourselves on one, any, or all of these virtues, but it is important once dementia strikes that you re-think your attitudes.

Why do you need a support team?

A person who has dementia can NOT live alone successfully, and in a perfect world we would never expect them to do so. ‘Care packages’ that involve carers calling in once, twice or even three times a day to help someone living alone are only a stop-gap measure. Very good carers who take pride in their work and genuinely care about their clients can make a difference, but they cannot replace the constant watchful presence that is required in all cases except the very early stages of dementia. Sometimes, however, this kind of care is the only and right option at the time and in this case it is important to get the very best care package that you can as long as it is possible to manage this way.

On the other hand, spouses and partners who live with someone who has dementia are put under constant stress as they try to look after them. Living with another person – even when they are in good health – requires constant compromise as we adjust our habits, actions and conversation in the interests of ‘rubbing along together’. Over many years these actions and adjustments become habitual, but they still remain. The most important thing to remember and take note of is that in any social situation all persons are involved in this constant compromise. Of course we can recognise that most partnerships are unequal and that one partner may take more adjustments than the other.

Usually the person who makes more adjustments to the will of another does this willingly. Nevertheless, living with someone involves a constant daily compromise between pleasing ourselves and pleasing another. But people who have dementia gradually lose their ability to see another person’s point of view – they lose their ability to empathise, to understand the everyday compromises that kept the partnership going. The partner who is the carer is left making all the compromises – possibly without even the satisfaction of a shared sense of humour or of togetherness – and certainly without the feelings of support they may have once had from their partner.

This is a burden no one, however loving and dedicated, should carry alone.

If you are a carer in this situation you can build a team to help you.

Who will be on your team?

Your support team can consist of anyone who is prepared to give time and help to you and the person you are caring for: family, friends, neighbours, professional carers, staff in a day centre and support workers from organizations such as the Alzheimer’s Society can all be included.

For more support and guidance on building your team read The Essential Carer’s Guide to Dementia by Mary Jordan, available as paperback and ebook.

This blog was published for World Alzheimer’s Month #RememberMe