Talking about dementia

Looking back, it’s clear that it wasn’t normal for a woman who loved nothing more than a gossip to stop going out and instead sit glued to daytime TV before heading for bed at 5pm. And Mum’s mild eccentricity didn’t explain why she stubbornly refused to move from Robinwood, a modest house on a perilously steep hill quite unsuitable for her and Dad as they entered old age, increasingly frail and ill.

So why didn’t my siblings and I see what was under our noses and force the issue? Because we didn’t want to? Because we didn’t recognise the signs? Because we were too caught up in our own busy lives? The answer to all these questions is yes, and connecting them all was the fear, ignorance and stigma surrounding dementia. Back in the early years of the 21st century, despite the evidence, we were all reluctant to mention the D word.

Reaching crisis point

It wasn’t until Dad’s heart condition led to him undergoing a triple heart bypass aged 78 that we three children knew we had to act: our parents’ GP warned us that if we didn’t, Dad could die. I reluctantly used the power of attorney granted to me some years earlier to sell Mum’s beloved Robinwood without her knowledge or consent and buy a more appropriate flat for them both nearby.

Unsurprisingly, it was all too much for Mum. Her vascular dementia, until then staved off by living in her familiar Surrey home of 38 years, unleashed itself and she suffered a psychological breakdown. She was sedated, then hospitalised for six weeks before moving into a nursing home.

So began one of the most stressful, traumatic, guilt-ridden and grief-laden periods of my life as I watched my once-proud mother become a mere shell of herself, living out her final eight years in unfamiliar rooms with strangers undertaking her most intimate needs.

Had dementia been more widely talked about then, had we known more about a condition that affects 850,000 of us in the UK and is the country’s leading cause of death among women, we would have pushed harder for Mum’s diagnosis. We could then have sought advice and been better equipped for the mental, emotional and practical challenges that lay ahead.

10 ways to help a family living with dementia

Campaigning for change

Knowledge, as Jayne Roberts says, is power. Her husband Chris was diagnosed with Alzheimer’s and vascular dementia at 50. The couple, who live in north Wales, now devote themselves to raising awareness of the condition and pushing for national policy improvements to help those living with it.

Jayne’s advice to anyone who has just been diagnosed (both the individual and his or her family) is to accept it. She says it’s good to discover as much as possible about the specific dementia involved (there are scores of different types).

‘If you know what you’re looking at, you can work with it, not against it.’ Her words resonate with me as I still feel guilty remembering the times I shouted at Mum for refusing to act in Dad’s best interests when in fact, she too was ill.

Living well with dementia

One of the best accounts of developing, then learning to live well with dementia is 63-year-old Wendy Mitchell’s memoir Somebody I Used to Know. Diagnosed with Alzheimer’s at 58, this down-to-earth Yorkshire woman wrote a daily blog to serve as her memory and it ultimately enabled her to write her book.

In it, she charts the progression of her disease, from a series of unexplained falls on her regular runs, to having to give up her NHS job, to becoming one of Alzheimer’s Society’s leading ambassadors.

She advises anyone newly diagnosed not to panic. It may be the start of a different life, of continually adapting as dementia throws more challenges at you, but it’s certainly not the end of the world. When Wendy forgets what cupboards and wardrobes are for, she removes their doors or sticks photos of their contents on them, and she sets alarms and reminders on her iPad.

As her multi-layered memoir reveals, although the condition takes away so much, it can also give. Forced to abandon her once-busy life, Wendy now appreciates life differently. ‘Enjoy the moment,’ she says. ‘It’s precious and will be in the past in the blink of an eye, so look at all the beauty surrounding you.’

This is a common refrain among those I meet through my dementia work and in it lies an important message for those newly diagnosed and their families: accept what has happened, seek advice, information and support from both experts and others in the same boat, and continue to live as best you can in your changed circumstances.

Care tips for the early stages of dementia

Always feeling different

Mike Parish and his husband Tom Hughes have been together 44 years and, talking to 64-year-old Mike, it’s clear that theirs is a love match. When they first moved in together in the mid-1970s they were under 21 and their relationship was illegal. During their life they have known great rejection and prejudice.

Tom’s dementia diagnosis has brought back this sense of being different, of standing alone. Mike says that when they attend appointments, medics assume that Tom, also 64, is his father, not his partner.

‘It’s an endless coming out,’ Mike tells me from their home in the Mendip Hills. Tom, an NHS pensions manager, was diagnosed with HIV in 2003 and began to experience memory problems five years later; by 2011 his symptoms forced him to retire early on medical grounds.

Following a few odd occurrences, the final trigger came in a restaurant in 2014 when, instead of ordering for both of them, Tom ordered only for himself.

‘My heart sank,’ says Mike. ‘I realised something was absolutely not right. It shook me to the core.’

A year later Tom was diagnosed with HIV-associated neurocognitive disorder (HAND), a rare form of dementia. Soon after the diagnosis Mike gave up his job with the fire brigade to care for his husband and says he went through ‘a tsunami of shock and grief’.

At the moment you need to turn to others for a hug, he explains, you can’t; you don’t yet understand it yourself and aren’t ready to use the right words. ‘You are utterly on your own.’

What can help you?

His tips for others caring for a loved one with dementia are to obtain power of attorney as soon as possible; update your will; and keep emergency contacts on your mobile or by the phone. He suggests preparing questions ahead for meetings with consultants, and recommends support groups, local carers’ centres and Alzheimer’s Society.

Speaking to Mike, Wendy and Jayne, it strikes me that though dementia is far more talked about now than it was when my family were trying to cope with Mum’s condition, relatives still flounder, stigma still lurks, help – particularly financial help – is still sparse.

6 reasons for forgetfulness

Fighting for carers’ rights

To address these failings, in 2015 a campaign group was formed for carers. Tide (Together in Dementia Everyday) was set up to assert carers’ rights and change society’s attitude towards the huge physical, psychological, emotional and economic impact of the caring role.

Tide’s chief executive Anna Gaughan says there is overwhelming evidence that the impact of caring for a person with dementia is significantly more complex and stressful because of their cognitive decline. She tells me of the ‘double bereavement loop’, explaining that in many ways grieving starts at the point of diagnosis because of the gradual sense of loss a relative experiences even before their loved one has died.

She’s exasperated that the green paper on social care has not yet appeared. ‘In the meantime, carers of people with dementia are on their knees!’ she says.

Helen Foster, director of operations at Alzheimer’s Society, says: ‘Despite the growing number of people living with dementia, people are often left to fend for themselves, facing a confusing, unfair and overwhelming system.’ She calls on the Government to create ‘a robust, sustainable system fit to meet the varying needs of people with dementia’.

Pippa Kelly is an award-winning blogger and journalist: pippakelly.co.uk

Dementia: in numbers

£26.3 bn is the total annual cost of dementia in the UK. Two-thirds of this – £17.4bn – is paid by people with dementia and their families, either in unpaid care (£11.6bn) or through paying for private social care

£600-£1,200 is the cost of a care home per week for someone with dementia. Good-quality dementia care in the home costs at least £20 per hour

£100,000 is the average cost of an individual’s dementia care, according to Alzheimer’s Society. Most of the care needed is social care, which is means- tested. Those with other conditions such as cancer receive free NHS care – hence the term ‘dementia tax’.

Government support for carers

If you are looking after someone for at least 35 hours a week or more you may be eligible for carer’s allowance: the rules are complex. The current allowance is £66.15 a week – that’s less than £1.90 an hour.

You can ask your local authority for an assessment of the impact that caring is having on you, and the support you need. You don’t necessarily have to live with the person you’re looking after or be caring full-time to have an assessment.

Social services or social work departments can arrange alternative care for someone being looked after so that an unpaid carer can take a break.

In June 2018 the Government launched its Carers Action Plan setting out how it will improve support for carers over the next two years ahead of the green paper on social care. It focuses on carers in general.

This article appeared in the August 2019 edition of Saga Magazine

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