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Chapter 1- What is it? Dementia. There are 850,000 people with dementia in the UK, with numbers set to rise to over one million by 2025. This will soar to two million by 2051. 225,000 will develop dementia this year, that’s one every three minutes. (Alzheimer’s UK) a. Definition. Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness. (Medical dictionary) A chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning. (Oxford dictionary) b. Description. Dementia is a group of symptoms caused by gradual death of brain cells. Society uses this word to cover all the conditions from mild to seriously impaired. It is the loss of cognitive abilities that occurs with dementia leading to diminishing loss in memory, reasoning, planning, and behaviour. While the overwhelming number of people with dementia are elderly, dementia is not an inevitable part of ageing; instead, dementia is caused by specific brain diseases. Alzheimer’s disease (AD) is the most common cause, followed by vascular or multi-infarct dementia, there are numerous types of dementia all with slightly differing symptoms and speed of progression. I am not going into detail here as there are numerous websites and books which give you descriptions, scientific analysis and any research, which is now fortunately starting to increase as dementia appears to be on the increase, and not just with retired folk as once thought. Ages are getting much younger, now even in the thirties and forties. It is also a disease that affects all walks of life, many famous people have suffered with it, Margaret Thatcher (Politician), Ronald Reagan (actor/US President), Charlton Heston (actor), Perry Como (singer) Glen Cambell (musician), Malcolm Young (AC/DC) Terry Pratchett (author). Dementia crosses all spectrums of society, rich or poor. Vascular dementia appears to be the main type that is identified and can start suddenly or come on slowly over time (many people with vascular dementia also have Alzheimer’s). This is the one my dad had. These problems can make daily activities increasingly difficult and someone with the condition may eventually be unable to look after themselves. c. Causes. Dementia is usually caused by degeneration in the cerebral cortex, the part of the brain responsible for thoughts, memories, actions, and personality. Death of brain cells in this region leads to the cognitive impairment that characterizes dementia. The most common form of dementia is AD (Alzheimer’s disease) accounting for one-half to three-fourths of all cases. The brain of a person with AD becomes clogged with two abnormal structures called neurofibrillary tangles and senile plaques. Seen on an x-ray the areas affected are black as the nerves and cells die off. Why these structures develop is unknown. Scientists now blame smoking, alcohol, bad diet and lack of exercise, but personally I don’t think it is any of these as my father was fit, never smoked, drank minimally and exercised every day until he forgot how. I believe in years to come it will be the food we eat and chemicals. I also think stress is a huge influencing factor. Other conditions that may cause dementia include:
d. Symptoms. Dementia is marked by a gradual deterioration of thought and other mental activities. They judge it on seven stages (see figures 1 & 2 for a rough timeline). Loss eventually affects virtually every aspect of mental life, day-to-day memory – for example, difficulty recalling events that happened recently, following the plot in a film or reading a book, and as the disease progresses the person cannot recall the previous reading so tend to give up reading books and watching films. It may begin with misplacing valuables such as a wallet or car keys, then progress to forgetting appointments, where the car is parked or even the route home. This should be on a regular basis not just occasionally as we all do this at times with stress and modern living. Language skills – for example, difficulties following a conversation or finding the right word for something, being unable to understand instructions or follow the logic of moderately complex sentences. Later, the individual may not understand his or her own sentences and have difficulty forming thoughts into words. This can also happen with those without dementia if they are nervous, for example. So don’t panic, if you are like me and keep misplacing items. I have included the two scales below as they may help the way forward. The timeline is only a guide and not completely accurate. Many of dad’s symptoms were earlier than in the chart. Each person is different, I believe. The most commonly used scale for judging the level of Alzheimer’s is often referred to simply as GDS, or by its more formal name, the Reisberg Scale or even by the lengthy name Global Deterioration Scale for Assessment. The GDS scale divides the disease process into seven stages based on the amount of cognitive decline in the inflicted person. This test is most relevant for people who have Alzheimer’s disease since some other types of dementia (i.e. Frontotemporal dementia) do not always include memory loss. Figure 1. Reisberg’s stages of Alzheimer’s
Figure 2
Chapter 3. Lasting Power of Attorney (LPA) If you feel dementia or any long-term illness is happening to your loved one or yourself, I highly recommend that you arrange to put in place a Lasting Power of Attorney as soon as possible. They are as important as a will! These papers are legal documents which allow you or someone chosen by you to represent you in all things i.e. talk to a doctor, talk about treatment plans, deal with all banking, pay bills. The paperwork once signed and legalised allows your delegated attorney to act on your behalf, and in a worst-case scenario to make decisions on your behalf. Without one of these legal documents, even your close family cannot make decisions and cannot act on your behalf. Persuade them to do this as soon as possible where they will need help with their health or affairs. There are two types of LPAs which need to be made, one for Health and Welfare and the other for Property and Financial affairs. Most people opt for the second one, but I cannot stress enough the importance of both. Without either you do not have the legal right to represent the person. If thinking of making an LPA please do both. In both forms, put as much information as possible, in health and welfare, your thoughts if you become infirm, what would you like done, would you make a living will, mention your thoughts on this, would you like to be resuscitated, if not say so. I appreciate it all sounds gloomy, but it makes life easier for those trying to look after your interests and saves so much soul searching for them. Maybe make an advance statement: you write this yourself with help if necessary, how you would like to be treated and any wishes you might have, i.e. dog care, like the light left on at night. This is not legally binding but must be taken into account. Or you can make an advance decision which is a living will which is legally binding. https://www.gov.uk/power-of-attorney. Above is the legal site to download the papers from or do it online. You do not need to hire an expensive solicitor to fill them in. You can do it yourself or do it jointly with whoever needs the LPAs. some health visitors well help, others not. Work systematically through the papers and fill in and follow the instructions, it is very doable. As above put in as much information as possible. Now they do it online, but it can still be done by printing out the paper version. The word attorney confused me, sounds so legal, but all it really means is who do you wish to act on your behalf, who in the long run do you trust enough to make all your decisions and oversee your life. You can choose one or more people to be your attorney. If you appoint more than one, you must decide whether they’ll make decisions separately or together. On the form there are 3 options to choose from:
Chapter 8. Family. Everyone in the family reacts to the diagnosis of dementia/Alzheimer’s in a different way. Some shut it out, in denial, some are ostriches and hide their head in the sand and go on as if nothing has changed. Some go into grief mode, weep and wail and act as if the patient is dying imminently. There is no right or wrong, we all handle grief, which is what it is, differently and can cope better or worse. A range of feelings, including:
Chapter 9. Assistive technology. These are some ideas to help in the early stages and encourage independence using technology. There are many gadgets, apps and ideas out there that could help. Please find below, some might not be helpful, some you might be able to adapt
These can be habit from a lifetime of getting up, so a good idea as most people need some kind of alarm in the morning. Alarm clocks can also be used to remind you of appointments or events, or as a trigger to remind you that you need to take a pill or eat something. There are clocks on the market to tell night from day, others have all this and day, month and date. All helps confusion as they lose touch with the process of time
Putting up a noticeboard in an obvious spot in your house can act as a trigger for memories. You could put it in the kitchen or by the front door to remind you to do things or take things with you if you leave the house. Noticeboards can also be useful for putting up a daily plan or a list of activities that you might want to do. Magnetic whiteboards are good because you can fix paper to them, write on them and wipe clean. Could be a blackboard, wipe board or cork board
If a notice board is not possible, perhaps an alternative could be a post-it by the front door or labels on the cupboards. everybody relies on a certain amount of notes and labels to help them remember. It can make life a lot smoother and easier if you know exactly where you keep certain items by putting labels up. So, whether it’s a note to remind you to put the bins out before you go to bed, or a sign to remind you where you keep your keys, they can be very useful
If you need to take regular medication but have trouble remembering when you last took it, or even remember taking it at a certain time. Pills can be divided up into days, morning and evening and fitted into their own compartments. A family member often sorts the pills into a weekly dispenser, and now you can buy pill dispensers with a built-in alarm. An alarm will sound when you need to take your pills. Some dispensers are very high-tech and can be programmed to only release the set number of pills each time, locking away the rest of them until they’re needed. The only problem is you need to remember what the alarm is telling you to do (available from live better)
If you keep losing your keys or glasses? You can attach special key rings to items which contain a tracking device that will beep if you press the corresponding colour-coded button on a base handset. If you have a family member who likes walking but could get lost there are a few ideas: tracking devices, same as ‘find my phone’ app tracking; just ensure the phone is on their person. Also, door sensors can remind the person when they leave the house with a message to set off phone or, tell someone they are going out. And there are perimeter sensors which can be traced by a loved one. These are all options that are out there
Ideal for helping you to remember short shopping lists or a friend’s phone number, memo watches let you record verbal messages, which means you can make a note of important bits of information and play them back when you need them. A talking memo pen acts in the same way. There are many apps, to use on phones, iPad or laptops. There are also many Alzheimer’s memory games. Sea Hero Quest is a game but whilst you are playing it you are part of research for the Alzheimer’s Association. www.seaheroquest.com. Apps. Apps that you can get on your phone, iPad and other technology are listed below and might help if one is into apps. They might help in various aspects of coping, with all aspects of dementia. There will be other apps out there - these are a few I have found. These are not necessarily for the one with dementia but could help the carer
Meditation
NHS approved apps
Sleep
Confidence and self-esteem
Money management
Time management
Exercise and nutrition
Films and books, I recommend to help see dementia from their point of view. Still Alice – (2015) Julianne Moore and Kristen Stewart – loved this film about early onset dementia, also, a book and stage play. The Notebook – (2004) an old one but all about love. Good one. Elizabeth is missing. BBC (2019) What they Had – with Hilary Swank (2018) Alive inside – documentary about love of music and help music can bring if they enjoyed music previously. I did not like the film but loved the message. Friends with benefits – (2011) Justin Timberlake , a most unlikely film to leave a lasting message about dementia which it touches on, there is one part of the film when Richard Jenkins (the father) removes his trousers and everyone is embarrassed, but finally the son joins him. This part of the film changed my attitude to taking dad out when he was a bit pungent, made me take him out and not be ashamed of him but proud
Chapter 10. Funnies
Chapter 12 – Mon Vie
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