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Each week I normally try to answer at least three questions from readers. But today, I’m going to focus on just one.
A gentleman got in touch about his wife’s suspected dementia diagnosis. I felt his beautifully written letter eloquently summed up an awful situation that so many people find themselves in, usually in later life.
I wanted to offer the fullest answer possible as, in spite of the heartbreak, there is some hope. So here goes…
Dear Dr Ellie, I am writing to you to ask for your advice and hopefully help. I believe my wife is suffering from dementia, and I don’t know how to deal with it.
She is 75 and I am 73 – we’ve know each other since we were ten but got together when she was 20, and married the year after that. Shortly after, our son was born and we now have a granddaughter aged 18.
Family and friends urge me to speak to a doctor, but I can’t do it.
She is aware of her condition, but when we have tried to talk about it we are both reduced to crying and stop talking.
I do everything for her, from cooking to washing. I have to make sure she eats. I take her shopping, and for walks, and she enjoys cleaning, but that’s about all she does. She likes certain TV programmes but has forgotten how to use the controls, so I record what she likes and sit with her when she watches them.
Last week I arranged with two of her friends to meet her for lunch. She had a good day and they have talked about meeting up on a regular basis, which she is looking forward to.
I wondered if you could advise me on what is available to us?
Yes, dementia only gets worse, which will be incredibly difficult for everyone concerned. But there are steps to take that will at least provide some sense of empowerment in a situation that can so often feel out of control
Football 1, Children 0… what an utter disgrace
If a schoolchild tests positive for Covid, in many areas their entire year group has to isolate for ten days. The quarantine extends to their families, regardless of whether or not they’ve been vaccinated (and now almost all have).
I have friends who’ve been through this multiple times over the last academic year. It’s incredibly frustrating and, I would argue, disproportionate. So I was apoplectic when Scottish footballer Billy Gilmour tested positive last week, yet his team-mates weren’t required to isolate.
Billy Gilmour, Mason Mount and Ben Chilwell in close contact with each other
Why is there one rule for footballers and another for children? Young people have been let down time and time again during this pandemic, and even if we move to a system of waiving quarantine for fully vaccinated people this doesn’t help under 18s who can’t yet have a jab.
I am frankly disgusted that I live in a country that prioritises a football tournament over the futures of our children. It is a disgrace.
A dementia diagnosis is painful and shocking, but it isn’t the end of the road. There are about a million Britons current living with dementia, and many live fulfilling, active lives.
Yes, dementia only gets worse, which will be incredibly difficult for everyone concerned. But there are steps to take that will at least provide some sense of empowerment in a situation that can so often feel out of control.
However, the route to a diagnosis isn’t straightforward. You don’t visit your doctor one day, and leave with a blood test result saying ‘it’s dementia’.
Indeed, dementia is not one illness. There’s Alzheimer’s, vascular dementia, dementia associated with Parkinson’s disease as well as Lewy Body dementia and frontotemporal dementia. Common symptoms include memory loss but there are also big differences.
For example, vascular dementia worsens in stages: patients will, all of a sudden, seem noticeably worse.
They’ll remain the same for some time, and then worsen again. Alzheimer’s, on the other hand, is a more gradual decline.
Some types of dementia can cause loss of inhibitions or other personality changes. These can happen before anything physical can be seen on scans.
For this reason it takes doctors months to settle on a final label, but it’s really important to get this process started as soon as possible.
A diagnosis allows carers and patients to be prepared, and for treatments and support to be given early, when they are most effective.
The first port of call should be the GP. The initial consultation can be done on the phone, with a partner or relative giving background.
A face-to-face appointment will then be needed, when some simple cognitive tests are carried out.
After this, patients are referred to a memory clinic for a formal diagnosis and ongoing treatment. There are medications that can help slow deterioration.
Experts at memory clinics can suggest things such as support groups – which patients always say help hugely – day centres and beneficial lifestyle measures.
They can also refer to an occupational therapist who can suggest techniques to make everyday activities such as dressing and meal preparation easier, provide memory strategies, and help with sourcing the right equipment to help with difficulties as they arise. Other places to look for advice may be the local carers association, a local dementia carers’ group and charities.
GP receptionists, the practice ‘social prescriber’ or local council can advise what’s in your area, while the national charity Dementia UK has a free advice line, on 0800 888 6678.
It’s vital to recognise that, for partners, their role will change to one of carer. And carers can face difficulties managing their own health, as well as that of their loved one. It’s no admission of failure to ask for help, if life is becoming a struggle – again, GPs and local groups will be able to offer support.
It’s also really important to look at the legal and financial side of things. Families need to arrange a lasting power of attorney, legal documents that let a partner or other third party make health and financial decisions on behalf of the patient.
The gov.uk website gives advice, as will your local Citizens Advice office. And while it’s still possible, discuss wishes for future health and end of life care.
This is all tremendously difficult to talk about, but tackling these thing early will save heartache later on.
Dementia sufferers usually get to a stage where they can’t live independently, or at least not without help from professional carers.
Trying to navigate a new world of medical, legal and care processes can also be bewildering, and at times insurmountable.
Dementia does, unfortunately, get worse. And, over time, it’s much more difficult for everyone to cope with.
It’s incredibly tempting to try to ignore problems – but that doesn’t make them go away.
And that’s why it’s vital to be honest with yourself now, and face things head on.
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