Wednesday, 27 February 2013

Social Care: A Women's Issue?

As I was writing my previous post, Socialcare Is Not a Lifestyle Choice, it struck me that this issue impacts disproportionately on women.

Longer life expectancy means that women are on average more likely than men to need care services.  For instance, 1/15 women aged 75 to 79 has dementia, as opposed to 1/19 men; that figure rises to 1/9 women v 1/10 men over 80, and 1/2 v 1/3 over 95: UK Alzheimer's Society 2014 infographicAnd UK National Life Tables 2012-2014 calculate that period life expectancy at birth is now 79.1 years for men, 82.8 years for women.  

Thus, more women will live beyond 80; more women will develop dementia – and need high-cost, 24-hour care. Two thirds of those currently diagnosed are women. Visit any care home, and you won’t need stats to tell you that most residents are female.

Women are also more likely to be carers, both as family and as (notoriously underpaid) professionals.


Why does this matter?


Well, for a start, let’s look at care funding.  As I have discussed in my previous post, those in England with over £23,250 in assets, including their own home, currently have to pay 100% of care costs.  Let’s take for example an elderly couple owning their own home, which is their main joint asset; one of them dies, the other needs full-time care.


Apart from that house (which would disqualify either of them from state funding), the female partner is likely to have far fewer assets.  Women on average earn less in their working lifetime (due to lower paid jobs and part-time posts); their pension will be less, because of the very life expectancy that means they are more likely to need care; and they may have had a career break to bring up children or to care for elderly relatives themselves, which means they have made fewer pension contributions and have less disposable cash to save for retirement or the “care insurance” the government now wishes to promote.


So the length of time until a woman expends all her assets on care will be shorter than for the equivalent man, while the time spent in care will be longer. More women may therefore face a traumatic move into cheaper care in very old age, and/or will die with little or nothing to leave to their family.


And what of the carers?


Looking after someone with a long-term, chronic or degenerative disease is hugely draining of both time and resources. A relative may start to help out informally, while also keeping up a full-time job. But as the loved one’s needs increase, the carer may have to reduce working hours or give up paid work completely. If they are self-employed, they may find themselves losing out on work opportunities, due to decreased availability and the stress of being on 24-hour call for emergencies.


If they take on the caring role full time, they will find that Carer’s Allowance is £62.10 per week; probably much less than they might have earned in the workplace. And they will only be eligible if the person they care for is also receiving a qualifying disability benefit – in the case of a person with dementia who resists formal diagnosis, this might not be easy to achieve. Many family carers may therefore find themselves living on their savings in order to take care of someone else, which in turn reduces their own capacity to plan for care.


Then there is the toll on personal relationships.  A social life is hard to maintain when you lose touch with work colleagues, have no disposable income, and little or no respite from the person you care for.  Marriages come under strain and may break up; or if you have become a carer at a relatively young age (as many more will do, with older first-time parenthood), you may never have formed a long-term relationship.


Of course there are many male carers (particularly of spouses) who experience these hardships too and may arguably find the loss of income and status even more of a shock; but there are far more women in this situation. Women remain the primary carers of children and thus are more likely to find themselves sandwiched between conflicting care demands and work in their middle years or indeed retirement. And women who have devoted their twenties, thirties, or forties to caring for parents may miss out on having children altogether, which leaves them without family support in their own old age.  Men at least have the continued potential to create another family life.


So that’s the situation on the ground: more women as both carers and cared for, struggling on fewer resources than their male counterparts.  And who makes the public policy for care needs?  Men.


The Sex and Power Report 2013, examining ‘Who Runs Britain?’, revealed that women remain very much in the minority at the higher end of office in most walks of life. (At that time only 22% of MPs were female; in the subsequent General Election of 2015, this rose to 29%, but still less than a third of key posts are held by women*.) The majority of media commentators, particularly in the “serious” areas of politics and finance, are also male, and, I would suggest, less likely to confront the above privations at first hand.


In early 2013, when the care-funding recommendations of the Dilnot Report were again on the news agenda, I listened to a radio debate in which a male MP said that, although it was regrettable that some people had to sell their homes to meet care costs, it was not unreasonable.  He could sympathise, he said, as his mother had been house-bound for the last two years of her life, and he and his siblings had been contemplating residential care for her.  In the event, she passed away before they had to make the decision; but if they’d had to sell the family home, they would have faced that with equanimity, because they were all grown up with careers, homes, and children of their own. They didn't need that inheritance. 


He meant well.  But I couldn’t help thinking his situation was probably not as representative as he imagined. Yes, if you have a good professional job with occupational pension and other benefits, partner and siblings to share the caring responsibility, a house and children of your own, you may well be able to meet a parent’s needs with relatively little disruption to your own life.  But many carers lack one or more of these things.  Some (most often single women) give up their own homes to move in with the person who needs care, only to find themselves homeless when that person later has to go into residential care and siblings demand the family home be sold to meet costs. 


And I would be willing to bet that, if that MP’s mother had needed full-time care within the family, and he had female siblings, it would not have fallen to him to give up his career – income, status, and social network – to take care of her at home. Indeed, many women find themselves becoming full-time carers not just to parents, but to aunts, uncles, or parents-in-law, while their husbands continue with their careers. It may be that this is the most practical option for some; at least these women have a partner for financial support. Single carers of both sexes have to manage without. 


So whenever I hear male politicians and pundits opining so dispassionately on the fiscal equations of care provision, as if money were the only issue, I can’t help but think they might view it a little bit differently if they were personally liable to spend the prime years of their lives alone at home with a chronically-ill relative, attending to that person’s every need including continence, for a maximum of £62.10 per week. 


On 10 January 2013, there was a parliamentary debate on dementia, organised by the Committee of Backbench MPs.  You can read the transcript here (scroll down to Column 515, Paul Burstow): 


Hansard 10 January 2013  


Some fine, informative, and heartfelt contributions were made by the MPs present, most of whom had first-hand experience of the issue.  It was the kind of debate to restore faith in politics.  Except that it passed with almost zero coverage.  The previous debate was on Syria – a “sexy” subject that was attended by far more members and covered extensively in the media. 


I watched the dementia debate live online and found it incredibly moving; I cheered many of the statements made.  But when I later tried to send a BBC iPlayer link to others who might have missed it, I found that only the first hour of that day’s session was included – the Syria debate, of course. 


Now I don’t dispute the importance of events in Syria as a major international humanitarian and political crisis.  But it’s not one for which the UK government has direct and exclusive responsibility. 


It seems to me that the contrasting value placed on those two debates is emblematic of our society’s macho priorities. The Backbench MPs' dementia debate shows that there are hard-working, thoughtful, genuine politicians, who truly identify with issues relevant to their constituents. But they remain, on the whole, backbench** MPs. 


To those at the top of public life, grandstanding on the world stage is more important than addressing the daily needs of ordinary people who depend on them and pay their wages. We can send troops to Afghanistan, consider interventions in Libya, Syria, and Mali, but there’s no money, we're told, for social care. Might that be because it’s “women’s work?”



* Read updated Sex & Power Report 2015.  (Relates only to parliamentary stats in this year; see original 2013 report for other areas of public life.)


** In September 2015, MPs Barbara Keeley and Debbie Abrahams, both passionate advocates of carer issues, who spoke at the Dementia Debate on 10 January 2013 (see Hansard above, columns 544 & 551), were appointed to posts in the Shadow Cabinet.  Barbara Keeley resigned in June 2016.


Friday, 22 February 2013

Social Care Is Not A Lifestyle Choice

What is “social care”?  If you're a care professional or family carer, like me, you will know; but to most people it’s a nebulous term, whose parameters, for both practical purposes and funding qualification, are endlessly shifting.

This has bred some assumptions among those who have not yet called upon it themselves.  I say “not yet”, for with greater life expectancy we may all find ourselves in need of care in some form.  And with social care so much on the public agenda, I have been surprised and sometimes angered at the lack of understanding of what it can actually mean.  


Many people – not just laymen, but politicians and pundits who issue statements and make policy – appear to have in mind the milder end of the spectrum: “service users” who are merely frail and perhaps isolated, who need someone to shop for them, cook a hot meal, and help with household chores and mobility issues.  This is the section of society that might well benefit from a bit more neighbourly support, as suggested by former Care Minister*, Norman Lamb.  


But at the other end of the scale are those with severe long-term or degenerative physical or mental conditions, who need 24-hour supervision in a secure environment; who may have challenging behaviours; and who ultimately need help with eating, drinking, intimate personal hygiene and continence – everything, in fact. Few people who have not seen this first hand truly grasp how all-consuming it can be.  


My 90-year-old mother never asked for care, because she didn’t believe she needed it.  She still doesn’t.  But she has dementia, a syndrome of degenerative disease which has been gradually claiming her mind and her faculties for upwards of a decade.  Lack of insight is often a feature of such cognitive disorders – she simply doesn’t recognise her own inability to take care of herself. 


Over the years, I assumed responsibility for all aspects of her daily life: finances, admin, shopping, cooking, cleaning, laundry, household maintenance, appointments with doctor, dentist, optician, chiropodist and hairdresser, even keeping up contact with her friends.  I did everything I could to keep her safe and well in her own home.  But it wasn’t enough. 


Loss of short-term memory eventually robbed her of the ability to complete even basic tasks unaided, such as making a cup of tea or washing her hands, as well as capacity to follow instructions or reminders. It made her feel constantly abandoned, because she couldn’t imagine the proximity of anyone out of sight and had no sense of time to recall when they were last there.  


The simplest technology - telephone and Aid-Call alarm - became a mystery to her, meaning that she couldn’t call for help in emergency.  Unable to interpret hunger pangs, remember there was food in the fridge, or know what to do with it, she forgot to eat. And when she stopped recognising the house where she had lived for 40 years, I knew that she needed round-the-clock care that I could no longer provide alone.  It was a decision I had dreaded all my life; but it was the only way left to protect my mum – the worst thing I have ever had to do. 


So when I hear talk of families supposedly "shunting their relatives into care" and “expecting the state to take their responsibility”, I just wish those who think it’s easy could know how it feels, and the long, long road to that point - and indeed the plight of those who have no family to support them in the first place.


Bad enough to go through all this, without also having to make complex funding arrangements at such a stressful time.  At present in England, if the person needing care has less than £23,250 in assets, including their home, they are notionally eligible for funding – if they are deemed to qualify in terms of care need.  


However, this qualification is far from straightforward and varies between different local authorities; assessment can be a lengthy and hugely bureaucratic process. Even those deemed to qualify may only receive part funding, if their assets fall between £23,250 and £14,250.


Those with assets above £23,250 receive no funding at all.  This effectively means that anyone who owns their own home will have to find 100% of the costs for their care – which in residential settings can be well over £1,000 per week.  (Local authority rates for the same care, in the same home - tariff set according to how much funding the authority receives  from central government and council tax - may be less than half this, but self-funders have to pay private rate.  Self-funders subsidise local authority care places on average by 43%.)  


And as many of us know (but politicians and economists don’t seem to credit), assets are not the same as ready cash.  For most people, their home is their major asset; and if they are incapacitated, they are hardly in a fit state to negotiate its sale and clearance.  This usually falls to family, who may also have to conceal the distressing news.  


For some who cannot instantly raise the necessary funds, deferred payments may be available (countrywide since April 2015), meaning that the local authority will pay care fees at the time, with costs being reclaimed from the person’s estate after their death.  However, such agreements also require a lengthy and complex application process, which may be impossible to complete (or even instigate) before a person needs essential care.  


It’s said that bereavement and moving house are two of the biggest traumas in life.  Well, dementia is an ongoing bereavement; and in order to meet care costs, many of us have not only to settle our relative in an unfamiliar and undesired environment, but at the same time to organise disposal of the family home – the last vestige of those precious lifetime memories that can no longer be shared. 


As an only child with no partner or children, I had to do this alone.  It took me the best part of two years of back-breaking, heart-breaking work.  


But what about the government’s long-awaited response to the Dilnot funding report – its proposal to cap the cost of social care to the individual at £72,000?** Health Secretary, Jeremy Hunt, has said it means that “no-one will have to sell their home in their lifetime to pay for residential care”.  Does it?  No.  


Firstly, note the qualifying phrase “in their lifetime” – an acknowledgment that most people will not be able to find £72K without selling their property.  Universal deferred payments would at least allow those who qualify (and who know how to apply) to pay after their death, but the £72K cap itself will now not be implemented until at least 2020 (if ever)**.  


Even if it comes into operation, those who have already paid this amount or far more, will not be exempt from charges; the fiscal clock won’t start ticking until the legislation comes into effect, with no back-dating – whatever you’ve spent to date, the dial goes back to zero and you still have to pay another £72K before the state picks up the tab. And that’s only crossed off at their end according to the minimum local authority rate – if you are paying a higher private tariff, it could take twice as long (and far more actual cash) to reach that cap.  


Plus you will still have to pay "hotel costs" - board and lodging (as distinct - how? - from "care"), up to about £12,000 p.a.  


That’s an awful lot of people already in care homes (or receiving paid care at home), and those who will go into care before 2020**, who will still have to sell their homes and pay maybe far in excess of £72K just to be safe, secure, fed, watered, bathed, dressed, and helped with continence issues – simple things that most of us take for granted every day. With the average stay in residential care being two years, most of those will die before reaching the cap and becoming eligible for any state help.  To put it bluntly.  And the government knows this.


But shouldn’t those with assets rightly fund their care, even at such punitive levels, you might ask, when there’s so little public money to go round? 


One argument is that sale of the family home is fair game, because the person “doesn’t need to live there any more” and “it’s just about the children’s (unearned) inheritance”.  This equation of assets and costs may look straightforward on a balance sheet.  But it’s not just a question of accounting; it’s people’s lives – and conditions such as dementia don’t affect one person in isolation.  


Many, like me, have already given their main earning and child-bearing years to looking after their loved ones, before conceding them to paid care – and then share huge financial penalty, on top of the pain of seeing their relative’s decline and shouldering the practical and emotional burden of dismantling the home that represents their shared life. 


If you say, “well, tough”, and still hold the principle that those with means should pay full cost for services because it's simply "fair", why apply it only to the old, the frail, and long-term disabled who need “social care”?  To play devil’s advocate, why shouldn’t other relatively wealthy people pay for things that are now part of public service provision? Education? Routine healthcare? Elective treatments, such as IVF?  


It may surprise you to know that even those with dementia in end of life nursing units, bed-bound, doubly incontinent, 100% dependent on help for eating, drinking, continence, mobility, and all other aspects of their existence do not necessarily qualify for NHS Continuing Healthcare funding, which is supposed to care for those with severe needs - because dementia is not in itself treated as a terminal illness, whose chronically debilitating symptoms are due to disease, but as "social care", which is conveniently excluded from the NHS ring-fenced budget.***  (CHC funding is assessed under a number of domains that rate the practical impact of health needs on behaviour, risk to self and others, ease/difficulty of  management by care staff, and the complexity of interaction between those domains - with aggressive, disruptive, and unpredictable behaviours attracting higher scores.)


What’s the difference between hospital treatment and residential care in terms of immediate, practical need to keep a person alive and well?  None.  Yet one is fully funded at point of need and the other is not. 


I agree that it’s reasonable to make some contribution for long-term care, if you can afford it.  Those like my mum are lucky to have enough savings to provide some choice of care, when others struggle to secure even basic public funding.  


But at A&E you are not asked for cash up front before receiving treatment, not told to sell your house to pay for chemotherapy or dialysis; for those with long-term, degenerative conditions, residential care can be just as urgent and essential. It is not a lifestyle choice.  


A version of this post was given as a speech at the launch of the Centre Forum report on social care funding, Delivering Dilnot (to which I contributed), at the House of Commons on 8 January 2013.

* Norman Lamb was Care Minister in the Con-Dem coalition government to May 2015.

** On 17 July 2015, it was announced that the Care Cap would now be "deferred" until 2020 - effectively shelving it.  Some may consider it was/is never intended to be implemented at all

*** This point added in July 2015.

The Dilnot Report can be read in its entirety here.

And read my hypothesis of why women are hit hardest - socially, professionally, and financially - by the current social care system.





Monday, 18 February 2013

We Must Have Facts! (Or Must We?)

In the autumn of 2012, I was invited as a member of Uniting Carers, Dementia UK, to attend the UK Dementia Congress in Brighton.  It was my first visit; I was amazed at the wealth of information, initiatives, and innovations. 

But it also struck me that there was a lot of jargon: talk of protocols and positive outcomes, all clicked through with endless power-point presentations.  Again and again, the question of data came up – how can we “prove” this is effective?  What’s the methodology?  How can it better be measured?   

Of course I appreciate that most of the delegates were care professionals, academics, and scientists, and these are the tools of their trade; evidence forms the basis of their practice and is needed to gain funding.  

Yet one of the most memorable anecdotes, arising from a session on dementia-friendly communities, was that of a man called Bert.  Bert loved to go to the driving range to hone his golf shots; but when a researcher first interviewed him, he hadn’t been for four years.  On camera he seemed very confused, frail, and listless.  It turned out that he hadn’t been to the range because there was no-one to go with him.   The researcher took him – and Bert instantly hit a crack shot.   

Image: Stuart Miles
FreeDigitalPhotos.net
Filmed after the trip, he was notably more articulate, animated, and smiling: a different man.  But had those interviews not been recorded, no-one but the researcher would have seen that; the (admittedly temporary) transformation wouldn’t show up in any data. It was plain and precious to anyone watching, but impossible to quantify.  

Other sessions on the use of arts in dementia care repeated this finding: activities that tap into the emotions and offer social contact anecdotally have positive effect; but because the recipients have no lasting conscious memory, and mood – unlike physical capacity - is fleeting and subjective, this is notoriously difficult to prove.

A day or two later, I was delighted to receive news that my mum, now in care, had had her hair done for the first time in over a year. To most people, that would mean nothing, except perhaps a moment’s recoil that it had been left for so long. But for her and for me it was a hugely significant event

I was reminded of Bert and the human interaction that had made all the difference to him. Would my mum’s hair-do be counted in statistics, I thought? No. But it was achieved through immense patience, perseverance, and planning by the staff where she now lives, and is greatly appreciated by me and hopefully by mum. This is what makes good care.

So please, all you academics doing such wonderful research and commissioners reading those reports - don’t lose sight of what it’s for.  Resist the mantra of Gradgrind, the authoritarian teacher in Dickens’ ‘Hard Times’, who advocated “Facts, Sir; nothing but facts”; and remember that, for those with dementia, feelings and imagination are often the only truths. 


A version of this piece was first published as a guest post on Gill Phillips' blog, Whose Shoes.  The original post can be seen here: In the Shoes of Ming Ho.


   

A Thankless Task?

My mum is 86, has mid-stage dementia, and has been in residential care for just over a year.  A former singer and teacher, she was for most of her life meticulous in her appearance, a smart hair-do being top priority.  In retirement, she regularly travelled 100 miles to a top London salon for the best cut and relished the social occasion.  As she got older and frailer, she became reluctant to make the effort for doctor, dentist, optician, or chiropodist - but remained hell bent on those crucial trips to the hairdresser!

Then suddenly, a couple of years ago, she developed paranoia about submitting to the experience.  I found it increasingly hard to persuade her, and finally she refused.  Her grooming declined, and with it her morale and sense of self; I became worried about her personal hygiene, but had to concede that raising the subject caused her greater trauma. 

So when she entered care, I was pleased to find there was an in-house salon, and signed mum up for a weekly blow-dry and bi-monthly cut; I hoped that staff, with expertise and back-up from colleagues, might be able to coax her. 

It was not an instant success.  Moving into care is a big step for anyone, and the cognitive difficulties experienced by those with dementia often mean that it’s not possible to prepare them in advance.  It was clear that mum would need a lengthy period of adjustment, during which it would be unwise to put her under pressure; she needed to feel she still had autonomy and respect.

Each week, staff would ask if she would like to have her hair done.  And each week she would say no.  Sometimes she’d agree, but say that she didn’t feel like it today; throughout the week, she would then tut to herself at “this hair!” and resolve to “get it seen to”.  But by the time the next appointment came up, she would have changed her mind.   

One year on, I had begun to despair that this block would ever be overcome.  But Sally, the unit manager, didn’t give up.  She and mum have a good rapport and Sally was prepared for the long game.  She noted that mum tended to be more amenable in the mornings, and primed the hairdresser to stand by to act on the spur of the moment.

Sally knows the foibles of all her residents and uses a different approach with each – formal or informal, jokey or serious, gentle or firm – to make them feel most comfortable and secure.  My mum, she noted, liked to pay compliments, often telling Sally that her hair looked nice. So Sally mirrored this, asking if she had always worn her hair as long as it had become?  No, admitted mum, it never used to be like this...  “Wouldn’t you like to get it washed and cut?  I’m sure you’d feel much better.”

But was the hairdresser any good, asked mum?  She would only go to the best. “Well, I wouldn’t recommend her if she was rubbish!”, said Sally, “She’s cut my hair.”  Through light banter, she skilfully planted the seed that having her hair cut was not only a good idea – but mum’s own good idea.

At last it all paid off.  One morning, Sally brought Kate, the hairdresser, to mum’s room.  “Look who’s here”, she said.  “You know you wanted your hair done?  Well, I’ve managed to get her to save a special slot for you; she could do it for you now.”  And, amazingly, mum got up and went without any protest! 

To people who don’t have dementia, this would be no more than a mundane, weekly event.  But for my mum – and for me – it was a major breakthrough. 

The loss of short term memory in dementia makes it extremely hard for carers to adhere to fixed appointments, which a person cannot anticipate or prepare for; it takes flexibility to respond to their needs, instead of trying to make them fit into a routine - while paranoid fears and delusions require special understanding and sensitive treatment. 

It is sad that any positive incident, such as this, is likely to be soon forgotten by the person with dementia and maybe not repeated.  It can seem a thankless task.  

But Sally got a huge sense of achievement from helping mum with this very personal progress; and it meant a great deal to me to know that my mum’s hair (once her crowning glory) was now clean and styled after more than a year of her own neglect – and that Sally had cared enough and taken the trouble to persevere.  These qualities of empathy, patience, and instinctive, practical psychology are what we all hope to find in care for our loved ones.


This feature was first published in the January/February 2013 issue of NAPA Living Life Magazine, under the title 'Haircare: A Daughter's Story'

 

Friday, 15 February 2013

The Crisis We All Dread

The call came at 11.00pm, as I walked home after a rare night out with friends. "Can you ring the police? They’re at your mum’s house...” It was the Aid-Call phone operator. My mother, then 85, had lived alone since my father died when I was a student 23 years earlier – and for at least the last ten, she had increasingly pronounced symptoms of dementia. Clearly, this wasn’t a conversation to have in the street on a mobile phone. I raced the last few yards into my flat, fighting to quash the rising panic. What had happened this time? Was she OK?

It was just after the August Bank Holiday, 2011; I’d been there, but was now back in London 100 miles away. The wonderful next door neighbours, who kept an eye on her in my absence, were on holiday, as were mum’s other friends. Alone and confused, she had gone wandering, the policeman said, and had knocked on the door of a young family whom she had never met before. They had called the police, who traced me via mum’s Aid-Call alarm.


It was not until the end of the week, when I could speak to those neighbours privately, that I Iearned the full story: mum had turned up agitated in the dark of night, sobbing that “a man who used to work for me has broken into my house and is holding my daughter hostage – he’s going to rape her!” As they didn’t know her, they took it at face value - the husband anxiously debating a ‘have-a-go’ attempt to prevent this seemingly imminent attack...

I asked the policeman if he could make mum a cup of tea and a piece of toast while I rang round for help, as she probably wouldn’t have eaten. (I always stocked up the fridge and she assured me she ate, but the rotting food would still be there when I returned). “No problem”, he said. In the background, I could hear mum enthusing, as if high on drugs, about “all these lovely, lovely men!” I don’t know their names, but I’ll always be grateful for their kindness. 

There was no-one available to sit with her that night. I had had a few drinks and couldn’t drive the hundred miles then. I called Social Services’ ‘out-of-hours’ number, assuming it to be intended for such emergencies – but was told they had just two people on duty for the whole town, who could only attend for specific tasks, such as taking someone to the loo or turning them over in bed. My only options, it seemed, were to call an ambulance and get her taken to A&E, or to summon an unknown out-of-hours doctor to refer her as an emergency admission to any care home with a bed. Either would have caused her extreme trauma. I had to risk leaving her unattended overnight.

How could I ever have thought she was safe to be left on her own? Well, I didn’t. I knew she wasn’t capable of taking care of herself. But she had always denied it and vehemently rejected help. In order to protect her, I had had to go behind her back to get a referral to social services and to a psychiatrist who finally diagnosed the condition I had recognised for years.

No matter how much time I or others spent with her, mum was increasingly plagued by dread, phoning me incessantly with lurid delusions and accusations, searching for long-dead relatives, manically packing her bags for the ‘evacuation’ she adamantly believed was coming, and locking herself in against imaginary intruders. She stopped recognising the house, even forgetting which was her own bedroom (where she had slept for 40 years), and became unable to envisage the room on the other side of the door.

And my life had stopped. How can you concentrate on anything other than fire-fighting such random daily crises? How can you keep any sense of yourself, when the very foundations of the life you share with the person closest to you are constantly called into question?

I had started proceedings for a Court of Protection order to formally manage mum’s affairs and had been arranging a care home place. I had felt huge guilt and conflict about doing this without her knowledge or consent - we were each other’s only immediate family, each other’s best friend. I hadn’t been sure I could go through with it. But the events of that terrible night convinced me I had no choice.

Thursday, 14 February 2013

We're Not All Ancient, You Know!

There’s a lot about dementia in the news these days.  That’s good.  We need to talk about it; it’s a burgeoning issue.  But why must it be illustrated nine times out of ten by that close-up of trembly, wizened hands?

Photo: Guardian
Yes, the majority of people diagnosed (or symptomatic) with it are upwards of seventy; but younger people get it too.  And dementia, in its many forms, has an impact on not just the person directly affected, but on family carers, friends, neighbours, and sometimes total strangers.  For the closest relatives, this is often a long-term, life-changing impact.

In recent years, the term “dementia sufferer” has effectively been outlawed among care professionals (although the media have yet to catch up), with the positive aim of redefining the status of those who experience the syndrome and banishing "victimhood". 


Two main alternatives have emerged: “people with dementia”; and “people living with dementia” – neither of which trips smoothly from the tongue.  Leaving aside the wider debate about language (to which I may return at a later date), one can applaud the concept of acknowledging the person first and the condition as subsidiary.   But there is another plus of the latter term: it can arguably encompass others drawn into the web of a loved one’s dementia.


According to the UK Alzheimer's Society (2014), there are currently 850,000 people with dementia in the UK and 670,000 carers of such.  That’s probably an underestimate, given the vagaries of diagnosis and identification, and it will grow exponentially as the population ages, but even so – over 1.5 million people already living with dementia, in the sense that their lives are affected on a daily basis. 
Photo: BBC News

The data also projects that “family carers of people with dementia save the UK over £11 billion a year”.  But what concerns me
is the wider “cost”, which is far more than money.  I know; I’ve been there. 

This blog is not a chronicle of daily care or an advice site; there are many others to fulfil those needs.  
Here, I’ll be posting occasional thoughts for debate pertinent to carers of people with dementia and other interested parties, and links to articles I’ve written elsewhere on the subject.  (See my other blog for stage, screen, and fiction writing.)
Photo: BBC News

For all the media and political attention, no-one truly understands – or wants to know – what dementia means until it directly affects them; but with greater life expectancy, it’s more than likely we shall all be touched by it some day

I want to remind the wider world that, while it may never be "sexy", it’s not a sideline issue – not only the elderly “live with dementia”.