What I have Learned about Dementure

Discussion in 'Welcome and how to use Dementia Talking Point' started by Eftee, Apr 23, 2019.

  1. Eftee

    Eftee New member

    Dec 6, 2018
    What I’ve Learned about Dementia

    My wife and I are in our early 80's. My wife was diagnosed with AD in 2010. Initially it was devastating with a bleak future. That is until I discovered and read ‘Contented Dementia’ by Oliver James. This book taught me that there is something you can do to take away the fear and much can be done to maximise the patient’s quality of life. What follows is what I have learned on this journey.

    Dementia is not a disease in itself.
    Dementia is a word used to describe a group of symptoms. These can include the gradual loss of memory, communication skills and the ability to think and reason clearly.

    Alzheimer's is a disease that causes dementia. It is probably the best-known cause of dementia, accounting for about two-thirds of cases in the elderly. About 500,000 people in the UK have Alzheimer's.

    Other diseases can cause dementia. After Alzheimer's, the most common causes of dementia are vascular dementia, dementia with Lewy bodies and frontotemporal dementia.

    My experience and research has to do with Alzheimer’s. Even with Alzheimer’s, symptoms vary from individual to individual.

    What these conditions have in common is memory loss and the consequences of that.

    However, memory loss is not necessarily an indication of dementia. When someone is suffering from memory problems, GPs will consider other possible causes before concluding whether the patient has dementia. There is a long list of things that can affect your memory that are NOT dementia;
    • Loss, such as the death of someone, a divorce or job loss
    • nervous tension or worry
    • noise or other distractions
    • general medicines, particularly if you are taking more than four
    • overuse of alcohol
    • poor health
    • sadness and depression
    • side effects of sleeping pills or other sedatives
    • sleep deprivation
    • some infections, particularly in older people (chest infections and urine infections are notorious)
    • the menopause
    • thyroid disorders
    • too many things on your mind
    • vitamin B12 deficiency
    • ageing
    Many of these are reversible. If the diagnosis is dementia, currently, there is no known cure and it will steadily decline.

    To understand the effects of memory loss due to dementia, several analogies help: the brain acts like an onion; the outer layers are recent events such as what I had for breakfast; inner layers are early events such as childhood. As outer layers die and peel away, recent memories disappear and the inner layers (memories) become the present. A better analogy uses a photograph album. Every event is recorded as a picture comprising a fact (the image) and associated feeling (the frame). For someone with dementia, a photograph in which the facts of what just happened are not stored, although the associated feelings are stored. As time goes on there are more and more blank photographs. When someone asks us a direct question, we look in our photographic album for facts. This presents the person with dementia with a problem because all they see are blank photographs, causing distress and anxiety. Feelings become much more important than facts. They can remember that they were just upset, angry or frightened but don’t remember why.

    How Memory loss impacts on day-to-day life
    • You cannot work things out
    • Frequently forgetting key dates, such as appointments or relatives' birthdays
    • Asking for things or for information over and over again
    • Forgetting what happened earlier in the day
    • Getting lost or wandering
    • Difficulties concentrating
    • Problems following conversations or TV programmes
    • Confusion
    • Spatial awareness, cupboards, rooms etc.
    • Sequences such as making a cup of tea or getting dressed cannot be remembered.
    Strangely, the area of the brain associated with music is not affected.

    As dementia progresses the patient’s behaviour - the things they say, do or don’t do - will surprise, or even shock. How we react to the inevitable annoyance, frustration, anger and stress this alarming behaviour causes will determine a) the patient’s rate of decline and b) both the patient’s and the carer’s well-being. If we follow our natural tendency and attempt to correct the patient’s behaviour, then the patient’s condition will go downhill fast, stress levels and despair will increase. Confinement to a nursing home will be sooner rather than later. It’s like trying to sail forward into a headwind, it gets you nowhere, you have to learn to tack.

    When caring for someone with dementia it is important to recognise the profound difference between our own sense of reality and that of someone with dementia. We are aware of our surroundings (where things are), the seasons, the time of day, what is happening, who we are, who our friends and relatives are and what has happened recently. When our memory fails us, all of this current awareness disappears; we have a different reality based on our distant past. There is therefore no point in trying to bring this person into our reality, we have to learn how to understand their reality and interact accordingly.

    Not knowing who you are, where you are, what you are doing here is very frightening - wanting to ‘go home’ is quite common. It’s only in later stages of the condition, or, if under the influence of psychotic drugs, are they unaware of this frightening state.

    Given that the patient cannot change, the onus is on the carer to accept and adapt his/her reactions. This means controlling one’s own natural tendencies, emotions and reactions. To avoid causing distress to someone with dementia, there are several rules that are known to work:
    1. Do not ask direct questions such as “what did you have for lunch” - they won’t remember having had lunch.
    2. Listen and learn what interests them - base conversations on their world.
    3. Do not contradict or argue - always agree with everything they say.
    While these seem simple rules, it is quite another matter to remember to apply them at all times.

    Do not ask “Remember when…?” If they can’t remember, this can be a frustrating or painful experience.

    Having to answer the same question several times can be frustrating, but repetition will happen. There is no benefit to showing your frustration to somebody with dementia. Saying ‘I've just told you that’ only reminds the person of their condition.

    Keep sentences short and to the point. Long, complex sentences can be difficult to grasp for somebody with dementia. It’s difficult to process several ideas at once as cognitive abilities slow down, so it’s better to give directions or instructions one step at a time.

    A dementia sufferer will often display childlike behaviour. Be careful not to chastise or respond like a parent or teacher as this can evoke bad memories and deny them their independence.

    Avoiding red flags: as an example, a person living with dementia may forget about a past bereavement or ask for somebody who has passed away. Reminding them of a loved one’s death can be painful, even causing them to relive the grief they've already experienced. In any event they won’t remember what you told them so what do you do the next time? Distraction is an important tool. For example, when the loved one is anxious or agitated, I have found that playing familiar music can have an immediate calming effect.

    Having recently read Steven Sabat's book I have found new ways to re-discover what is still there in my wife and how to tap into it.

    The more you learn about dementia the easier caring becomes but it's still not easy.

    Books I have found helpful:
    ‘Contented Dementia’ by Oliver James
    ‘My Bonnie’ by John Suchet. A very readable biography.
    ‘Dementia’ The One Stop Guide by June Andrews
    Alzheimer’s Disease & Dementia ‘What everyone needs to know’ by Steven R Sabat
    ‘Still Alice’ by Lisa Genova.
    ‘The Selfish Pig's Guide To Caring’ by Hugh Marriott.
  2. Reluctantcarer

    Reluctantcarer Registered User

    Apr 14, 2019
    Thank you. The reminder that despite this cruel affliction an individual continues & deserves their dignity. The problem for me is juggling these alternative universes and not giving in to the feeling that my identity is being subsumed by navigating these strange shoals. My patience is finite & respite is elusive.
    Today I failed. Tomorrow I will try again & fail better.
    My total admiration to all those on this journey. You are in my prayers
  3. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    Some good sensible advice in there, Eftee.
  4. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    I agree with @nae sporran - good advice. I found June Andrews' book helpful and also Talking Point .

    Nothing better than understanding from those who've trodden this path before!
  5. AliceA

    AliceA Registered User

    May 27, 2016
    Thank you so much Eftee, I hope you will go on posting. Such a clear account kindest regards to you. Alice.
  6. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    High Peak
    I'm sorry - I don't want to be rude or offend you but I really have to take issue with some of the points you make. There's some stuff in there that is just opinion but is stated as fact. Other things are just wrong, e.g.
    How we react to the inevitable annoyance, frustration, anger and stress this alarming behaviour causes will determine a) the patient’s rate of decline...
    No - that isn't true. Dementia is a progressive condition. It doesn't matter how frustrated or stessed I am - my mother's mixed dementia will progress at its own rate or be accelerated by further TIAs or other medical problems.
    I'm afraid your description of how memory works is pretty flawed too - it's a lot more complicated than you suggest.

    I really admire the amount of research you have done and hope the answers you have found work for you and your wife. But every person with dementia is different and no single protocol works for all. Not everyone who has dementia can be 'contented'. And that certainly isn't due to the actions of carers.
  7. wightdancer

    wightdancer Registered User

    Mar 15, 2017
  8. wightdancer

    wightdancer Registered User

    Mar 15, 2017
    Thank you for your informative post.
    My wife deteriorates slowly and it is hard to adjust to the new challenges that brings. Recently she seems unable to settle down and watch any TV programmes at all so just restlessly wanders about picking things up and making ummm noises. Getting her washed and dressed is getting more and more difficult as telling her to lift your foot or arm or brush your teeth means nothing.
    99% of the time I can take it in my stride but it is difficult not raising your voice sometimes!
    I worry what will happen if I get sick.
  9. Pouli

    Pouli Registered User

    Feb 9, 2019
    You are right that memory is a highly complex process. We tend to think that we remember things in complete chunks. But, in fact, our brains store a bit here, a bit there, faces, names, places all scattered in different parts of the brain like snapshots. And when someone says, 'Do you remember ...?' then our brains retrieve all the bits and rebuild the memory, rather like a jigsaw puzzle. But the connections don't work well in dementia sufferers, the memory doesn't fit well together, and produces something that doesn't make sense. As dementia progresses I suppose some parts of the memory will be lost, it will be a memory with holes in it, and that must be very frightening - part familiar, part strange and threatening and full of darkness..
    I've learned from this forum that, while there are many similarities, all dementia sufferers seem to display a different progression. When the nature of how we store memories is damaged, our brains create a terrifying world, according to the fragments that we retain. We cannot know how awful it is for them. I am sure that they somehow hold on to a sense of how things ought to be for a long time, which makes their flawed perceptions even more terrifying.
  10. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    My husband had degrees of a sense of how things out to be for a long time. He was at home just we two, no help for 10 years, He had vascular dementia the biggest problem at home was the personality changes, he became viciously verbally aggressive. He had to go into acare home after a hip replacement (fracured when he fell at the top of the staircase. ) Not allowed home. Loosing speech was tragic as he could be very articulate. He had his problems with personal care until the end. But his personality changed in various ways for the better and he became very affectionate and loving, holding hands exchanging kisses expressing his love. Also spells of how things out to be sometimes he would be deep in thought then smile and tears rolling down his cheeks

    It is said the emotions remain and I think this applied to my husband Henry. He retained his sense of humour and a strong sense quite often he deep down knew right and wrong. He knew when he was being difficult and would say "Sorry".

    Yes the brain is complex even the experts do not know everything about it.

    Loo xxx
  11. patbryn

    patbryn Registered User

    Mar 22, 2019
    I think when a PWD starts to talk about going home they are not really talking about a place but rather a time in their lives when they felt happy and secure, home is where we feel our most secure and unafraid. In my case that would be as a child at home where i am the one who is cared for and loved unconditionally but there are so many variables there is no 'one size fits all' for anyone who has dementia. we can read and read about it till we are blue in the face and then learn with a open mind that we know nothing.

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