Say the Unsayable

The world is rightly becoming more aware of the needs of people with dementia, and “living well with dementia” is a vital aspiration; but it seems to me that the drive to promote this undoubtedly worthwhile concept can sometimes deny the harsh reality for family carers. 

While it is possible to live well with dementia in the earlier stages and may remain so for some, for others the later stages are a monumental daily challenge, compounded by social and political pressure on family carers to maintain a brave face of positive thinking, “compassionate communication”, and willing self-sacrifice. 

We do them a disservice to pretend otherwise and thus to engender guilt for justifiably feeling overwhelmed, exhausted, angry, resentful, lonely, trapped, scared, and just plain heartbroken at the gradual loss of both the person they care for and the life they shared.  Professionals choose to enter the world of dementia and can likewise choose to leave.  Those whose families are struck by the disease have no such choice.  When dementia comes knocking, it won’t take no for an answer.

Lack of insight – the inability of a person with dementia to recognise their own needs and limitations – is the distinguishing feature that can make this type of caring particularly hard. Outsiders may think of “care” as a series of tasks.  Well, tasks are bearable; you can plan for them and factor them into your life.  I would be happy to undertake any number of tasks for my mum.

What I struggled with was the lack of co-operation or acknowledgement from her (often obstructiveness and fierce antagonism), which meant that I effectively had to go “undercover” to meet her care needs: fearfully rushing to change bed-linen when she had dozed off for five minutes downstairs; putting her clothes in the washing machine when she had gone to bed and getting them in and out of the tumble dryer before she was up the next morning; hastily clearing the fridge of rotting food and replacing it with fresh when she wasn’t looking; calling the doctor, hairdresser, and chiropodist secretly to arrange appointments for her and inveigling her into the car on some pretext; asking the GP for a referral to social services behind her back; hiring a carer to pose as a “health visitor” to check on her in my absence and ensure that she had a meal; and ultimately, when all else became inadequate, arranging a residential care place without her knowledge.  The worst thing I have ever had to do.

It was this suffocating, relentlessly stressful covertness  - not the tasks themselves - that wore me down over the years, together with distressing changes in mum's personality that distorted the previous dynamics of our close relationship.  It is our instinct to protect and nurture those we love.  I chose to look after my mum, in that I would always naturally do whatever I could to keep her safe and well and to make her life happy and fulfilled. But the gradual and mysterious progress of her dementia over the best part of 20 years meant that there was never a conscious point at which I chose to give up my own life in the process.  It just happened – and she has no idea.

In November 2013 I attended the annual meeting of the Dementia Action Alliance in London, at which the Carers' Call to Action* was launched.  One of the speakers was Ray Carver, who talked with admirable candour about the impact of her husband’s young onset dementia.  Like my mum, he remained in denial, and she had the responsibility of all decisions and organisation; like me, she found her whole life subsumed, while he remained oblivious, believing himself to be independent. Formerly a nurse, Ray confessed that her professional background still left her unprepared for the intense emotional trauma of living with dementia.  “I was a confident person”, she said. “Now I don’t know who I am.  I've lost myself.”  I’m sure many family carers will identify with that.

As a freelance scriptwriter in TV drama, I naively thought that my ability to work from anywhere on a laptop would be the solution to mum’s increasing needs.  But I discovered that high stress 24/7 soap writing is not compatible with high stress 24/7 dementia crises (not many jobs are!); and as sole carer with mum necessarily my first priority, I simply fell out of circulation. It wasn’t my decision, and now that mum is in residential care  - the thing I most sought to avoid - I have to pick up the pieces and start again, having lost the most productive years of my career (and personal life).

What seems incredible to me now is how long I soldiered on without knowing or being able to say that my mother had dementia. Although friends noticed that she repeated herself and sometimes mixed up appointments or got confused with money, she functioned reasonably well on a public level to those who would see her for maybe an hour or two at a time; only I was fully aware of the more disturbing symptoms of paranoia, obsessive behaviour, and cognitive malfunction, and had no-one with whom to discuss them and gain some perspective.

By 2007 and again in 2010, I was desperate enough to seek counselling for the utter despair I felt at the all-consuming and apparently manipulative drama our life had become. With no diagnosis of dementia, mum in denial, and no third party to mediate, I came to view these problems as “relationship issues” requiring “boundaries” to preserve my mental and physical health.

Indeed, with hindsight I can see that some of the more extreme paranoid symptoms of dementia can induce behaviours we might otherwise consider to be abusive: intense jealousy, possessiveness, and separation anxiety, leading to the carer’s effective imprisonment in the home and isolation from other family and friends; false accusations of wrong-doing that undermine confidence; round-the-clock harassment by phone, and sleep deprivation; denial of the carer’s own needs and objective reality, leading to a negation of identity.  Ray Carver told how frightened she had been by her husband's out-of-character aggression.

Of course now I understand that my mum couldn’t help these terrible behaviours – they were a product of her confusion and fear, caused by organic changes in her brain.  But for a long time, this was far from clear. 

If professionals ever came to the house, she would appear “normal” for their ten or twenty minute visit – articulate and sociable - and would insist that she was fine, did everything herself, had no carer. She totally believed this herself, and although much of what she said was untrue, they had no way of knowing and would go away satisfied that she was “coping”, when in fact I was on my knees.  Consequently, for a very long time, I did not identify as a carer even to myself, let alone to the authorities.

It took crisis situations to prove to me that this wasn’t a relationship problem – my mum had an irreversible, degenerative illness that no amount of love, effort, or accommodation on my part could solve.  I finally realised that what I needed was not therapy to learn how to modify my own (perfectly natural) distress response to her behaviour, but practical help to support us both with her debilitating disease.  That meant breaking silence.

So please, if any of this is familiar to you from our own experience, don’t try to weather it alone.  Don’t let the years slip by until both you and the person you care for have become invisible.  Take courage and ask for help now. 

And if you are a friend, neighbour, relative, or professional who suspects that someone you know may be living under these conditions, reach out and speak the first word.  They may not initially thank you for breaching that code of silence; but one day they will.  For the sake of those not “living well with dementia” – both those who have it and those who care for them - let’s be brave and say those “unsayable” things.

NB: For an important ruling on information sharing in health and social care, which may assist family carers in discussing concerns with professionals, see The Information Governance Review, March 2013, pg. 119, Principle 7: "The duty to share information can be as important as the duty to protect patient confidentiality.  Health and social care professionals should have the confidence to share information in the best interests of their patients, within the framework set out by the Principles." 

See also a document published by Carers Trust and the Royal College of Nursing on the Triangle of Care - the best practice partnership between people with dementia, their family carers, and health and social care professionals.

* The Carers' Call to Action was a time-limited campaign to raise awareness of dementia carer issues; it was wound down at the end of March 2015, but its work continues through a new organisation, Tide.

Update 2019: A new charity, Dementia Carers Count, has been set up specifically to support family dementia carers, offering 3-day residential and one-day sole topic courses for respite, education on dementia, coping strategies, practical, legal and financial information-sharing, resilience-building, and peer support.  These courses currently take place in a Birmingham hotel, prior to opening of a national resource centre in 2020-21. More details on link above.

Dementia UK Admiral Nurses and their helpline also offer support, as does UK Alzheimer's Society and its online Talking Point forum (peer support). 

Diagnosis: Why a "Label" Matters

Diagnosis is a hot topic – and a hot potato. Statistics published by Alzheimer's Research UK state that only 69% of people living with dementia in England have received a formal diagnosis (nevertheless a significant improvement on previous years), with rates of diagnosis varying widely between different areas of the country and the UK as a whole.

In order to address this, in 2013 the government made diagnosis a strategic priority and  proposed a new DES (Directed Enhanced Service)* for GPs to assess at-risk patients for signs of dementia: all over-75s, plus those over 60 with cardio-vascular disease, stroke, peripheral vascular disease and diabetes, and those with learning disabilities and long-term neurological conditions such as Parkinson’s.   

Escaped Alone by Caryl Churchill
Royal Court Theatre, London
Design: Miriam Buether

This assessment would not take place as part of a mass screening invitation; GPs would simply be paid extra to ask these targeted “at-risk” patients about their memory, during unrelated consultations for which they have voluntarily presented; those admitting concerns would then be referred for further tests. In addition, it was suggested that patients in these groups admitted to acute care – at A&E or as in-patients with other conditions – should also be assessed in this way.

To the layperson, it might seem that any initiative to improve opportunities for diagnosis of such a potentially debilitating condition would be a good thing. But it provoked controversy among health and social care professionals, a group of whom wrote a letter to the Daily Telegraph outlining their concerns. 

The traditional medical approach to disease might be summed up thus: patient experiences symptoms; reports symptoms; has tests; receives diagnosis and treatment; is cured.  Public health campaigns (e.g. for cancer or heart disease) have been designed with these assumptions in mind. “Worried about symptoms?  Come and get tested, so that you can be treated and cured.” There is a clear positive incentive to put oneself forward.

Dementia doesn’t fit this pattern.  Those who have it may not be aware of symptoms, so often can’t self-report – lack of insight is itself a common symptom. And there is no cure as yet.  So if symptoms are noted by others, who raise them with the person concerned, that person may well resent the intrusion, in the belief that nothing can be done and they will simply be “labelled” with the stigma of degenerative disease.

Given these fundamental bars to at-risk patients presenting to primary care in the first place, it’s no surprise that diagnosis rates are low in comparison with the number likely to be experiencing symptoms. Some GPs may also share the view that there’s no point diagnosing patients with a syndrome for which there is no cure and not much medical treatment to offer. 

Nevertheless, you might expect those who do perceive some wider social benefit to welcome a government initiative – and financial reward – to adopt a more proactive approach.  But many were deeply troubled by the proposals and saw them as counterproductive. Why?

Their main objection was that it diverts resources and attention away from practical support for those with dementia, funded through straitened social care budgets, not health.  There was no corresponding extra finance offered for post-diagnostic support, and services are already inadequate for those currently diagnosed. True. 

But if the medical establishment rejected this DES, would the money otherwise go into social care?  I don’t think so; it would just be lost. And infrastructure is never created unless demand is first proven. 

For instance, I’m 5’ 0” and for a long time lobbied a popular online retailer for short-length trousers – they had plenty for women of 5’ 7” and above, but none designed for my height. I was constantly told there was “no demand”.  “But I’m demanding!”, I would say, “There must be other people like me.” Not enough, it seemed. Finally, they did launch a petite range.  At last, enough people had put their hands up.

In order for demand to be met, you have first to show that those demanding are not a minority who can be ignored, but a sizeable percentage of the population, the service of whom provides societal gain.  OK, my clothes firm had a fiscal incentive to offer a product; but millions of pounds are currently being drained from the public purse by people with dementia (both diagnosed and undiagnosed) needing repeated acute or long-term residential care because their social care needs are not being met, and by family carers giving up work to bridge that gap and consequently paying less tax or claiming benefits.  There is an economic argument for spending more on social care.

To draw another analogy, there aren’t enough primary school places. Do we solve this problem by excluding all future under 5s from statistics?  Do we say those surplus children should stay at home and be taught by their parents or remain illiterate and innumerate?  No. We agitate for more schools. We may not get them as quickly or as plentifully as we might hope, but we do expect them to be provided. “It’s what we pay our taxes for”. Who has paid more than the elderly?

Until the full demographic scale of dementia is identified, government will always have a more pressing political priority.  Let’s not collude to obscure those figures.   

There is no doubt a fear that increased rates of diagnosis will open the floodgates to thousands more expecting a comprehensive care package that can’t be delivered. But I think many would be glad of just a bit of help, as opposed to none: information about support groups or phone advice lines; an hour or two of day care once in a while, enabling social contact for the person with dementia, and a quick shopping trip, exercise class, or quiet coffee for the carer; access to benefits (such as Attendance or Carer's Allowance), which might pay for some domestic help or social activity and go some small way toward compensating for lost earnings.  And most importantly, acknowledgement – the value of which should not be underestimated in itself. 

Some GPs argue that the label of diagnosis should not be necessary to access support services, and that families can already ask for help without this, if they need it.  Well, for many years I privately suspected that my mum had some form of dementia and did my best to cope with it alone; but without official acknowledgement of that label, I didn’t feel I had permission to say it – for her benefit or my own. 

For instance, when she suffered collapse due to a urinary tract infection (which I feared might be a stroke), I couldn’t openly tell paramedics or hospital staff that she had cognitive difficulties. This led to a very traumatic and medically unsatisfactory hospital experience. (Initiatives such as the Butterfly Scheme might have helped in this situation, but it had not been set up then, and is still not universal.) Or when her behaviour sometimes bemused, alarmed, or offended friends, I felt I couldn’t explain and some then drifted away. Had they fully understood, they might have been more sympathetic.

I’m a relatively young, articulate, proactive person, but without that official “label”, I felt powerless to act. Imagine how much harder that situation might be for an elderly spouse, without internet access for information or comparison of experience, who believes that marriage vows mean that any trials must be borne silently in fortitude.  They may be most in need of help, but least likely to ask for it.

So what else worried the doctors about this government directive?  An emphasis on early diagnosis, they suggest, plays to vested interests of the pharmaceutical industry.  Pharma can only help a small minority of people with dementia, to a small degree – current drugs may slow down decline in memory function, but cannot halt it, nor reverse it. They only work for those in the early stages, and inconsistently even then. 

(Safe and effective treatments for the more challenging behavioural changes, misperceptions and hallucinations of later stage have yet to be found.  I have described some of the effects in action here: paranoia; confabulation; cognitive confusion). 

You could take the view that early diagnosis is therefore vital to help those few who might benefit from pharma; or, as some doctors suggest, that early diagnosis is advocated for political reasons, to increase lucrative uptake of long-term drugs for the financial benefit of Big Pharma. Either way, medics worry that a PR offensive stressing the possibility of medical intervention gives patients unrealistic hopes and expectations.

Then there were concerns about the initial assessment. Asking patients who have presented for some other ailment if they have “memory problems” is unlikely to gain a positive response from those who do, while provoking antagonism from many.  In any case, memory problems may not be the first or most significant symptoms of dementia.  Personality change, cognitive, or behavioural issues (potentially more disruptive) might not be apparent to the person experiencing them; witness testimony may also be required. 

And standard queries in the current Mini Mental State Examination (MMSE) – e.g. remembering a sequence of words (“apple, penny, table”), counting backwards, or reasoning problems, such as “how many camels are there in Holland?” - can be confusing for those without dementia when under stress, while at the same time being unreliable indicators of those who do have symptoms. 

(I would like to see more practical tests related to real life: for instance, can you tell me the stages involved in making a cup of tea; can you look up a name in this address book, dial the phone number, and leave a simple message asking the person to call you back?)

I think the medics have a valid concern here that political imperative has run ahead of considered thought about the content of the tests, and such superficial investigations are at least as likely to panic the “worried well” as to identify the genuinely afflicted.

In their letter to the Daily Telegraph criticising this screening proposal, the group of professionals referred to “its potential to harm people both directly and indirectly”.  I didn’t immediately understand what they meant by this, in comparison with the more obvious potential harms presented by other common types of screening – e.g. for breast or cervical cancer, which are routinely offered to all women of a certain age. 

So I asked one of the doctors to explain. One possibility, he said, was the psychological trauma of being given the diagnosis - which in the case of MCI  (Minor Cognitive Impairment) may not even lead to dementia, while upsetting the patient with perceived bad news and uncertainty over the future.  I can see this. 

But I would argue that there’s a similar danger with breast and cervical screening, which can pick up “pre-cancerous cell changes” that merely indicate an increased risk of developing the disease and can equally frighten the patient. The basic cancer risk is only an estimate and may be miniscule, but patients are encouraged to accept treatment to reduce this tiny risk; yet the treatments are invasive and may create symptoms that didn’t previously exist - a complex equation of probabilities. 

While early diagnosis of dementia (or MCI) might lead to some people being prescribed unnecessary or ineffective drugs, by this reasoning the instance of women receiving invasive treatment for pre-cancer must already be great, with demonstrable physical and mental harm?  Should we then lobby to stop women’s cancer screening?

Another potential harm in unsought dementia testing is loss of trust between doctor and patient.  If patients feel that a routine visit to the surgery may lead to diagnosis of dementia by stealth, say the medics, they will be discouraged from presenting with other health conditions.

I can sympathise here.  My fear of antagonism, upset, and damaged trust was the major barrier to my pressing for diagnosis for my mum.  I found it particularly hard as sole carer (and mostly sole witness to her symptoms) to broach this unwanted issue with her; I desperately needed support.  If doctors are afraid to raise dementia with their patients**, how much harder is it for that person’s nearest and dearest in a one-to-one relationship, or for concerned friends or neighbours? 

That’s why I would welcome some form of “screening”, in the sense of a proactive annual review of all at-risk patients, which takes the initial onus off patient or carer, and could provide a neutral framework for such family concerns to be brought up.  It could also identify those without family support. 

I would like to see a wider range of first points of contact - holistic means of accessing support for those who are reluctant to present themselves in medical settings. The burden of initiating support should not fall solely to GPs, any more than to carers. 

But all agencies need to acknowledge that dementia is a condition that doesn't affect just the patient – for every person with dementia, there is probably at least one family member, partner, or friend, whose life is equally blighted by that person’s symptoms.  And those who have no-one to advocate for them may be left in terrible circumstances, which would not be acceptable if attributed to any other medical cause. 

There’s never a good time to be diagnosed with dementia. Early, and you may not accept it at all; late, and you may already have come to crisis.  “Timely” is a word now preferred by some; but all these terms are subjective.  “Timely” suggests a point at which some medical or practical good can still be done, but the person in receipt of diagnosis is willing to accept it.  In my experience, this latter condition may never be met. 

I appreciate that the GPs who oppose the government scheme are not saying they are unwilling to diagnose, just that they believe it’s counterproductive to go looking proactively for those who aren’t presenting as symptomatic.  But that’s to assume that all those who don’t present are non symptomatic, or that they are “coping”.  I know this can be very far from the truth. 

“Diagnosis of dementia is a life-changing event”, say the doctors in their letter. No, developing dementia is a life-changing event.  Refusing the label, or declining to give it unless asked, doesn’t make the symptoms go away, it doesn’t negate the need for help, or avert eventual crisis. 

I agree that the government screening proposals were not the most effective for either patients or GPs; they admit of many flaws. And I did once believe that a label would serve no useful purpose for my mum, who would have rejected drugs or referral to a memory clinic; I discussed this many times with her GP.

But now I know that diagnosis is not just about those things; support services may not be perfect, but diagnosis gives you the key - an entitlement to ask. 

With hindsight born of a decade of lost years (both mum’s and my own) I wish someone had come looking for us.

*Updated DES link @April 2015-2016.

** Doctors may fear that patient confidentiality means they cannot discuss a person's symptoms with family or friends, but this is not so.  The Information Governance Review of 2013 (see pg 119, Principle 7) states that "The duty to share information can be as important as the duty to protect patient confidentiality. Health and social care professionals should have the confidence to share information in the best interests of their patients, within the framework set out by the Principles."

Read the response of Professor Alistair Burns, National Clinical Director for Dementia, Department of Health, to the GPs' Telegraph letter.