Understanding Alzheimer’s Disease
To a degree, most of us accept that our health will decline in later life. Before we even hit retirement, it’s likely we’ll have already experienced some form of forgetfulness or muddled thinking.
“Where did I put my keys?”
“Why did I come upstairs?”
Nothing momentous, just a reflection of our demanding days and the cognitive slowing so often associated with ageing.
But how do you know when absent-mindedness in yourself or a loved one is a sign of something more significant?
At BelleVie, we care for many people who are living with different types of dementia, of which Alzheimer’s disease is just one. Thought to affect 1 in every 6 people over the age of 80, it’s marked by changes in memory, thinking and reasoning skills. These changes may come on slowly or rapidly, and they’ll affect different people in different ways.
Unhelpfully, Alzheimer’s is also connected to a number of other health conditions, and it’s not uncommon for someone to have something called ‘mixed dementia’, where they show symptoms of at least two different forms of brain disease.
Joining all of these dots, it’s perhaps not surprising that Alzheimer’s isn’t always easy to spot early on. And unfortunately, spotting it early is important, as the sooner it’s diagnosed, the more can be done to slow its progression.
But when even doctors can fail to see the signs, how can the rest of us hope to?
Many people come to us asking for advice about Alzheimer’s disease – how do they know if they’ve got it? How quickly is a loved one likely to decline? Should they consider paid care now, or later? Although the disease’s symptoms and trajectory vary from person to person, there are often parallels, and so we felt it would be useful to speak candidly to someone who has felt its full force at close quarters.
David Ensor lost his beloved wife Susan to Alzheimer’s in 2021 and now speaks openly and campaigns tirelessly to raise awareness of the reality of the condition, and of the need for better treatment and care options for those it affects. It’s our hope – and David’s – that the information in this article will help guide those struggling with unanswered questions.
Early warning signs
As we’ve said, we all misplace things, forget things, and get confused from time to time. But when these kinds of incidents start to impact daily life, it’s time to sit up and take notice.
For David, a tell-tale sign was when Susan kept thinking she’d lost her handbag, even when it was right next to her.
“It’s a creeping disease”, says David. “You expect to become a bit absent-minded with age, but this was different. It wasn’t immediately obvious at the time, but in hindsight I can see the warning signs were there as early as 2016.”
Obtaining a diagnosis
If you’re concerned about your cognitive abilities, or those of a friend or family member, then it’s worth booking in to see a doctor. However, David warns that the process isn’t always straightforward.
“Lots of people don’t really understand Alzheimer’s disease, and that can include some medical professionals. Even if they do, the resources aren’t always in place to help. We were lucky in some respects, as we lived close to an assessment centre. Even then, we faced long waits for an initial appointment, and then months more for a second assessment. My advice is that you know yourself or your loved one better than anyone, so if you feel there’s a problem, keep pushing your doctor or healthcare provider until your concerns are taken seriously and investigated fully.”
What to expect
While finally being able to put a name to the symptoms may bring a sense of understanding, a diagnosis of Alzheimer’s disease can weigh heavily. David, however, took the news with his typical optimism, feeling that he and Susan would come together to cope with whatever came their way. What he hadn’t fully appreciated at the time, was that elements of the partner he’d known for 70 years – and loved for over 50 – would be lost to him over the course of her illness.
“Although I’d heard of Alzheimer’s, I didn’t realise how destructive it is. I spent over two years looking after Susan full-time, caring for her around the clock on a daily basis. Even when her condition deteriorated, she was still able to recognise me, though other parts of her vanished.”
Things to think about
Although Alzheimer’s can progress more slowly in some people than others, and will manifest differently, most people will need some level of care. David and Susan took the decision to move closer to family soon after the diagnosis. “We wanted to be near our sons, to have people nearby who could pop in – I think it helped me as much as it helped Susan.”
David felt strongly about looking after his wife himself, only moving Susan into a care home for the final few weeks of her life when she’d lost all mobility, and it would’ve been unsafe for her to stay with him.
“Looking back, the life I was living then was very restricted, though paid carers came in from time to time to give me an hour’s respite. I know other people prefer their loved ones to be looked after by professionals throughout. I think it’s down to the individual and their circumstances. There’s no one answer.”
Where to get support
If you are caring for someone with Alzheimer’s, or any kind of dementia, then be realistic about how much you can take on. It can be time-consuming and emotionally draining to look after someone full-time, and not everyone has the skills or physical strength to manage all aspects of care. If the thought of a care home feels like a step too far, then home care providers can be a good compromise, offering high-quality support in familiar surroundings.
Regardless of whether you’re actively caring for your loved one, you will undoubtedly care about them and want to spend time in their company – something that isn’t always easy to do.
“Your loved one’s illness may well be hitting you harder than it’s hitting them, so try to look after your own needs too. Try and find a local support group or contact the Alzheimer’s Society.”
David also advises that old photographs and favourite pieces of music can be valuable tools to help your loved one reconnect with some of the world they remember. “Susan was a long-time member of a choral group. Right up until the last few days of her life, she’d still smile with recognition at certain songs.”
Hopes for the future
We realise this article may have been difficult to read, but hopefully it has provided some useful insight. As David says, “Be honest about Alzheimer’s and talk about it. It’s important to talk so we can raise awareness.”
And that’s what David is doing to this day. Talking about a disease he knows far better than he’d have liked to. Doing what he can to grow understanding – so that more people can spot Alzheimer’s sooner, and more funding is secured to one day find a cure.
If you still have unanswered questions and feel David may be able to help, simply email us at firstname.lastname@example.org. He has supported many people on this journey and is happy to connect either through us, or directly over email or phone if his calendar allows.
Things to do if you suspect Alzheimer’s disease
- Book a doctor’s appointment
- Push for an assessment
- Keep your brain active – crosswords and puzzles can really help
- Socialise – the more you can interact with others, the better
- Keep your hearing in check – studies show hearing problems can lead to social isolation, so if you’ve been given hearing aids, it’s well worth wearing them
- Only drink alcohol in moderation