Your Dementia Questions Answered
Let’s talk about dementia. By 2021, it’s estimated that over one million people in the UK will be living with dementia, and 1 person in every 14 over the age of 65 will be diagnosed with it*. Whilst dementia’s becoming more common, it’s not a normal part of ageing. So, if you want to find out more about dementia, or are worried about your elderly parent then read on, because we’ve got your dementia questions answered.
We’re thrilled to have teamed up for this article with Dementia Debbie. Debbie has been a nurse for almost a decade and specialises in dementia. She currently works as an Admiral Nurse and dementia lead for a local hospice as well as now running her own business The Dementia Coach. You can find her on Instagram @dementiadebbie.
What is the difference between dementia and Alzheimer’s disease?
Dementia is the umbrella term for a decline in mental ability (such as memory, reasoning, logic and speech) severe enough to interfere with daily life.
It’s a degenerative brain disease and there are many types of dementia that affect the brain in different ways (for example, vascular dementia is caused by reduced blood flow to the brain whilst frontotemporal dementia affects the front of the brain and the temporal lobes over the ears).
Alzheimer’s disease is the most common form of dementia, caused when two naturally occurring proteins in the brain become abnormal and affect brain function.
If you’re stuck with how to explain dementia to a child, read our article on this very topic.
What are the first signs of dementia?
The early signs of dementia can vary. For Alzheimer’s disease it is often memory loss and apathy (lack of interest) but that is not true of other types of dementia. In Lewy Bodies dementia for example, you’re more likely to see hallucinations and sleep disturbance as first signs.
In general, with common early symptoms of dementia, you’re looking for changes in the person’s memory, abilities, personality and behaviour.
What do you do if you think your parent has dementia?
If you want someone with dementia to go to the doctor, then I’d follow the steps I mention in the question above. Something to be aware of though is if the person refuses to go to the GP and they have mental capacity, then professionals cannot investigate or take any action.
Mental capacity is a tricky area and I would suggest seeking more guidance around it if this is an issue in your case. This is really about trying to persuade them to go see the doctor who can then get the ball rolling on the investigations to find the root cause of their dementia symptoms.
As dementia is a progressive condition, people living with dementia can still drive if they’re assessed and able. We’ve written all about driving and dementia in our article on driving over 70.
How do I know if my mother has dementia?
You don’t for sure know that someone has dementia until it’s investigated so don’t panic, the person will pick up on your stress and anxiety and it will make the situation worse.
However, families often notice early signs of dementia before the person does so you are a key piece of the puzzle for doctors working out what might be wrong. Sitting at home searching the internet and getting more worried won’t help so speak to them and then try and get them to their doctor.
Do at-home dementia tests work?
If you search online then you can find simple at-home tests to detect early signs of dementia. In my honest opinion though, I would avoid a DIY dementia quiz approach, most found are simple short screening tests that don’t tell you much, and really someone should have training to complete it correctly.
An in-depth memory test should always be carried out by a trained specialist, commonly a memory clinic nurse. If you’re worried about your elderly parent, then book in with your GP and they can refer you to your local memory clinic.
What’s the process for getting a dementia diagnosis?
In the UK the common process for getting a dementia diagnosis, in short, is to see the GP. They will try and rule out all other possible causes (such as dehydration, stress etc). Usually the doctor will carry out a blood test and urine test as part of their investigations. Then, if all their tests come back clear they would refer to a dementia specialist, commonly a memory clinic.
You may then wait a little while as often memory clinics are quite inundated and so they have waiting lists. The memory clinic will carry out in-depth memory investigations which are likely to include a deeper level memory test, a CT or MRI scan, history gathering, physical and mental health history gathering, family perspective and sometimes an ECG (heart trace).
Once all of that is done the consultant might be able to give a probable diagnosis.
What should we do after a dementia diagnosis?
One tip is to ask for anything they discuss with you or your elderly parents in writing if they can, as you may forget after appointments and it’s good to refer back to.
Find peer support such as carer groups to have an outlet for how you’re feeling with people that understand what you’re going through. That could be a local carers group or even a group on Facebook. Talking about your experience or asking your dementia questions can help.
When you’re ready, look to try and learn more about it. Anything by Teepa Snow on You Tube is good. I offer a new diagnosis related course that helps you understand what’s happening in the brain and how it affects things such as behaviour and communication.
What dementia support services are available for carers in the UK?
The ElWell website is fab and full of info for carers and I offer private support worldwide to help carers and professionals learn more about dementia. I strongly feel carer and professional education is key to really assisting someone to live well, we must step into their world, that’s what I give people the ability to begin to do.
There is free support in the UK, finding out what your local Alzheimer’s Society and Age UK offer is always a good start. If you think a dementia home care agency is needed there are lots of places you can privately source support or go through your local adult social care.
But for carer specific support I highly recommend using the Admiral Nurse Dementia Helpline, it’s free phone and open 9-9 weekdays and 9-5 weekends. They’re specialist nurses, like myself, for families experiencing dementia who can help answer any questions on dementia and give you emotional support, their number is 0800 888 6678.
Can you care for someone living with dementia at home?
Yes you can – in fact 61% of people experiencing dementia live at home**. The main thing to consider is what you can manage and cope with, and then get additional support from care agencies when needed. Consider the layout of the home and any home adaptations that may be needed for the person to be able to remain living there in the future as well.
It mostly comes down to asking yourself “can we keep them safe and well supported at home?”. Sometimes issues can occur that mean caring for someone with dementia at home is not possible, despite our best efforts and that won’t be anyone’s fault.
I’m a dementia carer, what questions should I be asking the doctor?
It’s so important to ask the GP anything that is concerning you about your loved one and dementia. Write down the questions you want to ask before the appointment, so you don’t walk away then remember something else you meant to ask.
Just be mindful though of what you say to the GP in front of the person, be careful you don’t distress and upset them by talking freely about them in front of them. I would suggest trying to discuss things separately or in writing if there are things you need the doctor to know but can’t say in front of the person. For example put it in a note and discreetly give the doctor the note at some point with the heading, family’s observations.
Will I get dementia if my mum has it?
There are a lot of varying factors but generally speaking there is still little evidence to say there is a strong genetic link. I’m not a geneticist and I know there is loads of work going on looking into this but at present we don’t have much proof to say that you will get dementia if your mum has it.
One thing for sure though is if you worry a lot about getting dementia, then you will get forgetful which can make you think you might be getting dementia. This is because worry and anxiety causes forgetfulness and poor concentration it. If in any doubt always see your GP.
How can I improve quality of life for my parent with dementia?
This is a great dementia question! The answer really is that a person experiencing dementia is often living in the moment. There are ways you can continue to help them with that – avoid general questioning about the past or future and help them live happily in the here and now. Actually, we’d all benefit from living more like that, we’re too preoccupied with later or earlier that we miss the beauty around us now. This approach would help them and you, you could start practicing mindfulness yourself and then introduce those techniques to them.
Is a dementia diagnosis a death sentence?
Whilst there isn’t yet a cure for dementia, you shouldn’t view a dementia diagnosis as a death sentence. In fact, any negative thinking by you will be picked up on by the person and makes them feel worse. Likewise if they view it only negatively it is likely to progress quicker, but that is true of most diagnosis not just dementia.
The mind is immensely powerful and there is a lot to be said about how mindset affects progression and abilities for illness. Many people live well with a diagnosis of dementia so no it doesn’t have to be a death sentence. Death is the only certainty in life, except most of us don’t know when and from what.
Whatever stage of the dementia journey you and your loved ones are at, it’s important to understand what’s happening, what support is out there and how best to move forward. Getting your dementia questions answered is key – don’t be afraid to speak up and find what you’re looking for. Remember that whilst dementia affects a person in many different ways, they are still underneath the person you know and love.
*2014 Dementia UK report, commissioned through Kings College London & London School of Economics
** Prince, M et al (2014) Dementia UK: Update Second Edition report produced by King’s College London and the London School of Economics for the Alzheimer’s Society
If you think your parent has dementia, then the first thing you should do is talk to them. Don’t make them feel like you’re ganging up on them, help them feel like they’re in control. Find out their fears, worries and concerns about havng a dementia check. Try and get them to see the doctor, and reassure them that many things can cause the symptoms – not just dementia. Including dehydration, infection, stress and more, which can all be treated by the GP.
Yes you can – 61% of people living with dementia are at home. It’s important to consider what you can manage and cope with, and then get additional support from care agencies as needed. Consider home adaptations that may be needed to help the person continue living at home. Also ask yourself “can we keep them well and safe at home?”. Sometimes issues can occur that means caring for someone living with dementia at home is not possible, despite our best efforts and that’s not anyone’s fault.