The theme of this year’s World Alzheimer’s Month (or World Dementia Month as I prefer to call it) is #KnowDementia. The aim is to highlight the early signs and symptoms of dementia to enable people to get a more timely diagnosis, and live as well as possible for as long as possible.
So how much do you know about dementia?
The topic of knowing dementia is one I’ve written about many times. One of my earliest blogs on this topic, written in September 2012 before the Dementia Friends initiative was launched (the information in this blog and in Dementia Friends materials is very similar), was entitled ‘So how much do you know about dementia?’
In that blog I said:
- Dementia is not a normal part of ageing (types of dementia are caused by diseases of the brain).
- There is so much more to dementia than just forgetting things (dementia symptoms are multi-faceted, vary hugely and are individual to each person).
- Dementia doesn’t just happen when people get older (young onset dementia, defined as dementia in someone under 65, is increasing and dementia can even occur in children, although this is rare).
- People with dementia are still people, not a disease.
- Dementia is not contagious.
- Those living with dementia still want to lead active and full lives and not be locked away and forgotten about (most people want to be cared for at home not in communal establishments).
- People with dementia can make a positive contribution to society if supported to do so.
- You can live well, or live as well as possible, with dementia.
I then added further down:
What does dementia teach you?
- To appreciate the smallest things in life, since they become extremely precious (a simple hello from my dad in his final few months brought a massive smile to my face).
- To make the most of every day (good days and bad days become an ever-present feature with dementia, and when the good ones come along you want to make the most of them).
- To never give up (yes there isn’t a cure yet, but there is a lot you can do to make someone’s life with dementia a more positive experience than it would have been ten, twenty or thirty years ago).
- Finally, in my case, to share our experiences with the world (everything my dad went through is there to inform, educate and influence others. He would have wanted to make a real and lasting difference, and hopefully through me that will be his legacy).
What is dementia?
Of course, knowing dementia is also about more specific information around signs and symptoms, and to this end I wrote ‘What is dementia?’ in May 2013. In that blog, I gave this (long!) list of potential signs and symptoms:
I cannot tell you exactly what dementia may look like in someone that you know, but you may notice persistent changes in that person’s ability to:
- Maintain their personal care (their appearance, hygiene, co-ordination of clothes etc).
- Sequence tasks (like getting dressed in the right order, or making a drink correctly).
- Operate simple household items or learn how to use new ones.
- Losing, hiding or putting things away in their correct place (for example they may put their slippers in the fridge and their milk by the bed).
- Maintain their diary (not attending appointments, failing to go to social events that they used to enjoy).
- Maintain their financial/legal affairs (shopping, paying bills etc).
- Orientate themselves (getting lost in otherwise familiar places, including at home. This can lead to wetting or soiling themselves if they cannot remember where the toilet is).
- Communicate verbally (ie repetition).
- Speak in a familiar language (reverting to a native language that they remember from childhood, or using foul/abusive language that they never previously uttered).
- Regulate their speech or behaviour (for example going out not fully dressed or speaking inappropriately to strangers).
- Read or write (losing concentration, misspelling or incoherent writing).
Your loved one may also experience:
- Changes in appetite, food preferences or desire to eat/drink.
- Seeing or hearing things and paranoia (perhaps accusing you or someone else of stealing).
- Excessive walking (going out unprepared – perhaps not properly dressed – getting lost or looking for a place that they remember from many years ago).
- Being disorientated in time (for example wanting to start their washing machine in the middle of the night), or living in a different reality (possibly believing that they are in a different era or location).
- Problems recognising faces that should be familiar.
- Losing, hiding or hoarding objects or items (that belong to the person, or someone else).
- An increasing need for reassurance (someone who was previously independent becoming clingy or losing confidence), or a need to be constantly reminded about things.
- Altered sleeping patterns (sleeping more and/or at unusual times, or sleeping a lot less, often waking in the middle of the night or experiencing nightmares/dreams that they find troubling).
- Changes in character, mood, emotions or personality (examples include aggression, anxiety, tearfulness or withdrawal).
- The classic short-term memory problems that are so associated with most people’s understanding of dementia (long-term memory is often unaffected).
Knowing dementia is really only half the battle. I think knowledge has improved in the 9+ years since my dad died, but fear, stigma and difficulties accessing services remain, with the latter becoming even more magnified due to the COVID-19 pandemic. This news two months ago highlighted the current challenges: ‘Victims of the Covid dementia disaster: How 50,000 cases were missed in lockdown’, and dealing with a backlog like that in dementia care, as in so many other health services, is going to take a long time, if indeed services ever catch up.
If you are a person or a family waiting to get a diagnosis or further support, or indeed trying to persuade a loved one to seek a diagnosis, there are things you can do now that will help you/the person, regardless of your/their diagnosis status. My suggestions would include:
- Environmental changes like those I outline in: ‘Living with dementia in your own home’.
- Using non-drug therapies like music. Access Music for Dementia and read about our experiences of using music with my dad in my blog: ‘Singing from the same hymn sheet’.
- Do life story work together. Find out why in my blog: ‘Life story work – The gift that keeps on giving’.
- Access help and support that’s available regardless of a diagnosis, including the Admiral Nurse Dementia Helpline, resources from Innovations in Dementia and support for family members from Dementia Carers Count.
Until next time…