Monday, 16 May 2016

Dementia Awareness Week | Five Things You Might Not Know About Dementia*

This week (15th-21st May 2016) is Dementia Awareness Week, which is a topic that's close to my heart, given that I work in the Dementia unit of a care home. If you follow me on Twitter you'll no doubt have seen me moaning and complaining about my job, but I do love the residents I care for; I spend more time with them than I do with my own family, friends or boyfriend, so I definitely grow to love them. I thought today would be a nice opportunity to share a few things you may not know about dementia, based on the two years I've spent working with some truly amazing people.
Five Things You Might Not Know About Dementia
It's not just about getting "a bit forgetful".
Memory loss is usually the first thing people think of when you mention Dementia, but actually, it's an extremely complex disease which affects people differently, and can impact on literally dozens of areas of life. Yes, a lot of people suffer with memory loss (usually starting with more recent memory), but other common symptoms include problems with speech (dysphasia), mobility (balance and co-ordination), and spatial awareness. Dementia can affect a person's ability to make decisions; understand what's real/now and what's pretend/a memory; control their emotions; and understand the consequences of their actions.

There are different types of Dementia.
Dementia is a bit of a catch-all phrase which describes the symptoms of a number of diseases. The most common form is Alzheimer's Disease, but Dementia may also be Vascular (following a stroke or brain injury). Other types include Dementia with Lewy Bodies, and Fronto-Temporal Dementia. Each type tends to present slightly differently, although there is a lot of overlap and it's ultimately very difficult to get an accurate diagnosis.
Dementia
It doesn't just affect "old people".
Yes, the majority of people with Dementia fall into the 65+ age category, but around 5% of sufferers have what is known as Early-Onset Dementia - this includes anyone whose symptoms started before the age of 65. Early-Onset Dementia can affect people as young as their 40s; a family friend of ours was diagnosed in her mid-40s. Younger people with Dementia face a whole different set of challenges - these are often working adults who become unable to work or properly take care of themselves, which has a whole lot of social stigma attached.

It's progressive.
This means it gets worse as time goes on; the idea of a little old lady who forgets about her cup of tea until it goes cold and insists on calling you Mabel might seem endearing, but ultimately, Dementia will kill her - that's the cold hard truth of the matter. The disease literally destroys brain tissue until there isn't enough left to function. Having worked with people with extremely advanced Dementia, I think it's fair to say that toward the end the person isn't really there anymore for the most part; it's heart-breaking to see someone become a shell of what they were.
Dementia Awareness Week 2016
There's no cure.
There are drugs available for Dementia which may slow down its progression, but as yet, there's no cure. There are also lifestyle changes that people with symptoms or a diagnosis are encouraged to make, such as eating more healthily, cutting down on alcohol, and getting regular exercise - but again, this won't cure the disease. Some of the people I work with have lived active lives up to the age of 90+, eat well and didn't drink, and yet still ended up with Dementia.

I know I've painted a fairly bleak picture here and I'm sorry for that - but this is the reality of Dementia. However, there are often several years of mild symptoms before a diagnosis is made, and several more years following diagnosis before the impact of the Disease is overwhelming. People can and do live well with Dementia for a number of years.
Barchester Healthcare have a really helpful guide available which is designed to help people choose the right care home for their loved ones with Dementia; I know from experience that moving a loved one into a care home is a stressful experience for all concerned - and my top tip would be to give it time, don't expect your relative to settle in overnight. Some people take to it like the proverbial duck to water, whilst others take a good few weeks to get used to the change and "find their feet" in the new environment.
Do you have any experience of Dementia in your family or amongst your friends? Do you know much about the disease?

xo
[*Sponsored post. I was planning to write this anyway but the opportunity came up so it'd have been silly to turn it down!]

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42 comments:

  1. This was so helpful to me - my great grandmother had dementia and this has really helped me to understand it a bit more, so thanks!

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    1. I'm glad you found it helpful Cassie, and I'm sorry to hear about your great grandmother. xo

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  2. Ah, this is so sad. :( I don't know anyone with Dementia and really hope my family or I will never have to face it. Thank you for sharing. x

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    1. I hope so too Justina, it's a horrible disease :( xo

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  3. My boyfriends Step Dad has dementia and he lives on the other side of the world (Australia!!) so we're going out to see him over Christmas and I'll be honest, I'm a little bit scared because I literally don't know what to expect! I'm sure it will be fine though! <3 xx

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    1. Oh Sophie, I totally get why you'd be nervous! I'm sure it will be fine, you just need to take it as it comes & not take anything too personally :) xo

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  4. I don't have any experience of it with my family but some of my family friends and neighbours have it and it can be such a devastating disease, not just for the individual but their family too :( x

    Heather | Of Beauty & Nothingness x

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    1. It really is Heather - it affects everyone & it's so stressful :( xo

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  5. I used to work on a residential Dementia unit. I now work on a Young Person's unit but I also do shifts on the Dementia unit where I work too so I've had so much training and experience with Dementia. Like you it's really close to my heart. I've seen people's Dementia progress and it's so heartbreaking. It's very difficult to not get close to people when you work in care, and when they pass it's as if you've lost a good friend or family member yourself. I hope that one day a way to stop Dementia will be found. So many people are diagnosed with it now and it's really worrying. Thank you for writing this post and spreading this information.

    Liz ~ Dreaming of Diamonds

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    1. It's horrible isn't it! Hopefully a proper treatment & cure will be found sooner rather than later :) xo

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  6. my granma suffers from it and it is so sad to see her go like this.. :(

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    1. I'm sorry to hear that Alice, it's awful to see :( xo

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  7. I used to work in a hospital as a Health Care Assistant where I regularly met people who have Dementia and their families. I think you've done a really great job of summarising it - more people need to be aware that it's not just being "a bit forgetful"!

    Have you ever read the book (or watched the film) Still Alice? It's a really powerful story about early onset Alzheimer's. I haven't seen the film yet but I cried my eyes reading it!

    Sam x

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    1. Ooh no I haven't Sam - I've heard of it and meant to pick it up but haven't got round to it yet - thanks for the reminder! :) xo

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  8. This was such an important post to read about and I know a lot of people have worries about to dementia but you setting it out like this is really helpful. I'm sure you and your collegues do a lot of great work and for that, I thank you!

    Musings & More

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    1. Aw thank you Emily, that's such a lovely thing to say! ♥ xo

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  9. Reading this post made me cry a little bit as it's subject im far too familiar with - my Great Grandma suffered from Vascular Dementia for about 6 years before she passed. It is such a horrible disease and just as horrible to witness, it's hard enough to see someone you love suddenly forget you and forget themselves but to see their mind fail them and their body to suddenly be unable to do such little things is awful.

    Such a great post and i think this will be really helpful for people to read!
    Natalie xx
    youralmostalice.co.uk

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    1. I'm so sorry about your Great Grandma Natalie - it really is a devastating disease, just as horrible for the family as it is for the person themselves. I think vascular Dementia is the cruellest as it's usually so sudden without any warning :( xo

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  10. My great auntie has dementia and it really was so sad to see her go from someone who was so chatty and well presented to someone who can't feed herself and hardly communicates with anyone. She was only 60 when she was diagnosed and seemed to go downhill so much within about 4-5 years. Her husband is a lovely man who really did try his hardest to look after her, as did her close family. She's been in a home for around a year now because it just got too difficult no matter how hard they tried. Her husband visits her every day but most of the time she has no idea who he is. It really is such a cruel disease and I so hope that one day a cure is found.
    Em x
    http://themusingsofem.blogspot.co.uk/

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    1. I'm sorry about your Great Auntie, Em :( It's horrible, it must be so hard for her husband - bless him. xo

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  11. all four of my great grandparents were diagnosed with Alzheimer's, but my great grandma Marie was the hardest to watch. I would go often with my grandpa to visit her. Sometimes she would remember my name/story perfectly, but know nothing of her own son.. it broke my heart. and his. This disease needs a cure, but the brain is so complex, I fear it will never happen. thank you for spreading awareness xX

    kynialikethecountry.blogspot.com

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    1. I'm so sorry, Kynia, that must have been so hard for you and your family! Hopefully one day soon a cure or at least a treatment will be found xo

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  12. This such an important read. It is very helpful!
    xx
    Mademoiselle Coconath
    http://mllecoconath.com

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    1. Thank you, glad you've found it helpful :) xo

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  13. I have worked in a nursing home with people with Dementia and it really is an awful illness,

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    1. I totally agree Mellissa - I find the work so rewarding but often it's utterly heartbreaking too. xo

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  14. This is a really lovely and thoughtful post. There is so much we don't know about dementia still and the heartbreak of families involved is unimaginable. I used to volunteer at a dementia home and got to see first had how complex it is. I'm glad you pointed it out that it is much more than a blimp in memory. Visual impairments, delirium and deteriorating motor skills are all part of this tragic issue. Thanks for speaking out about this!

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    1. Thank you Jess! It really is an awful disease, people often don't realise that it can affect literally anything your brain does xo

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  15. It is such a cruel disease, and I do one day hope they find a cure. My grandma has dementia since her late 50's and she died in her 80's and it was so hard not to be able to have a relationship with her x

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    1. I'm so sorry about your Grandma, Rachel - it's heartbreaking to watch someone you love decline like that. xo

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  16. It so sad when this happens to people and it must be so hard for the person who has it and also to the loved ones

    Laura
    Öku Möku

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    1. Definitely, Laura - it affects the whole family and it's so sad to see xo

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  17. Dementia really is such a cruel disease, and I do one day hope they find a cure.

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    1. I hope so too - the sooner, the better! xo

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  18. I wrote a comment before, but not sure if it went through. Let me try again.

    My family and I just laid my grandmother to rest this last Wednesday. She had suffered from dementia for a year or two, then one night, her health just plummeted. It was devastating.

    However, I want to reiterate what my mother (a former home hospice nurse) once told me: yes, dementia is an awful disease, but for whom? Take my grandmother for example. She was so far back in her mind that she was a happy little girl again playing with her momma, daddy, and her sisters. She wasn't in any pain from the dementia (just from other health problems) So yes, dementia is a terrible disease for us living and well, but for the dementia patient, I believe it's a blessing in disguise.

    Love this article. Actually did not know there were different forms of dementia. Thank you for teaching me something!

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    1. I'm sorry to hear about your grandmother, Jessica - that must have been really hard for you all.
      I wish I could agree with your mother and I guess for some patients it can be a blessing in disguise - but for others I know it is horrific. I've had little ladies reliving abuse from their childhood every time anyone tried to go near them, I've had people who spend 20+ hours per day pacing the halls looking for their family, or get up at 3am in floods of tears, thinking they're late for church so they're going to hell. It can be just as awful for them.
      I'm glad you've learnt something, though! :) xo

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    2. Wow. I've never thought of it that way. I'm sorry you had to witness that. You're completely right. Thank you again for teaching me something new. I'll look at it differently from now on.

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    3. I do think it can go either way - equally, I've had the happiest little old ladies who haven't got a clue what's going on. I'm glad to have shared some awareness though :) xo

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  19. Thanks for posting this, Jess. Such an important issue to raise awareness around. My hubby's grandmother suffered from dimentia for decades until she passed away in April this year. She was "gone" for years not being able to speak or understand whether she's cold, hungry or needing a shower. It's horrible. Her daughter looked after her in her home until the very last day. She basically gave up her own life, never married or had children. Very sad.
    This is important information & thanks again for this post, lovely.
    Xox Nadia
    www.mielandmint.com

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    1. Thank you for your comment Nadia, I'm so sorry to hear about your husband's grandmother. Her daughter did a wonderful thing for her. xo

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  20. Thank you so much for writing this! I'm volunteering in a nursing home this semester and even though my grandmother had Alzheimer's, I still don't know a whole ton about dementia and how I should deal with it. Lots of good info in this post I can reread if necessary! :)

    Melissa | melissa-manning.com

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    1. Good luck with your volunteering Melissa, I'm sure it'll be an amazing experience! You'll pick it up very quickly - but knowledge is definitely power. I think the key for me has always been trying to understand things from the patient's perspective - even things that seem random or irrational to us, have a meaning to them. xo

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