Tag: dementia support

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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.