Not Just "Memory Problems"

It was the kind of trip we’d made numerous times together – a few days away in a nice hotel, a bit of shopping, theatre, sight-seeing.  Mum had always been phobic of lifts since getting trapped in one in her youth, so I had booked rooms on the first floor. It was only one short flight of stairs. Hampered by arthritis, she had set off first, taking it slowly, while I waited with the luggage for the lift. We should have emerged on the floor above at about the same time, hardly more than a minute later. 

But when I stepped out of the lift with our bags, she was nowhere to be seen.  I thought she might already have let herself into her room, but no. I looked up and down the corridor, called out for her: nothing. Anxious now, I ran back down the staircase, thinking she might have fallen, but thankfully she wasn’t lying injured there. Nor was she in reception. 

I returned to the first floor.  Corridor still empty.  Beginning to panic, I dashed up to the next floor, and the next – and eventually I found her.  “Where have you been?”, I scolded, with the angry relief of a frightened parent reclaiming a feckless child. “Why didn’t you just wait for me by the lift?”  She didn’t know.

At the time, back in 2004, I couldn’t understand how mum could have become lost with only one flight of stairs to negotiate. But now I recognise this as a classic case of disorientation. Unable to read geographical markers, she had simply kept on moving. 

By itself, this incident would have been insignificant. Anyone can have a moment of confusion in an unfamiliar place.  But looking back, it was just one of a number of strange happenings over the years.

There was the time, for instance, when I was struck down with a stomach bug while visiting mum for the weekend.  Afraid I was going to choke after hours of violent retching, I begged her from my supine position on the bathroom floor to call the out-of-hours doctor. She couldn’t make that call. With my stilted prompts, she got as far as dialling the number, but proved unable to describe my symptoms or to give the doctor my address to register me as a temporary patient. I had to crawl on my hands and knees to the phone to speak to him myself.

And as time went on, I noticed that mum found it increasingly difficult to open food or household packaging. Instead of following instructions or doing the most obvious, intuitive thing, she would employ the most difficult, strenuous means – hacking away at plastic boxes with a knife instead of snapping the designated tab, or tearing the ends of a packet of wet wipes, instead of simply pulling the adhesive strip at the front. Attempting to remove a stain from the carpet, she once cut off the pile with scissors.    

Then there was her obsession with the washing-up brushes.  Whenever I went to use them, they would not be to hand by the sink, but hidden in some far corner.  Why?  “Because he’ll see them!”, she would say crossly, meaning our benign neighbour, whose garden backed onto ours. The only way he could see into our kitchen would have been from an upstairs window, and then but a distant glimpse; yet mum was convinced that he would not only be able to see those brushes, but there was something shameful about being thus caught, or judgmental in his looking. Of course I knew this to be nonsense; but if I tried to reason with her about it, she would go wild. 

“Do you have memory problems?”, ask the dementia campaigns.  While this is a simple opening gambit to encourage consideration of a syndrome whose symptoms are many and varied, it can be a misleading over-simplification. 'Memory problems' to most people means forgetting names and facts: where did I put my keys? Who’s whatsisname, you know, that bloke who plays the Belgian detective, him with the ‘leetle grey cells’?

The anecdotal examples I have cited above are bound up with memory, yes; but they are not as straightforward as momentarily forgetting something that can be recalled with a prompt.  They are cognitive malfunctions. 

That’s why the proposed new name* for dementia is Major or Minor Neurocognitive Disorder (NCD) – an unwieldy and controversial term for various reasons, but arguably a more accurately descriptive one.

With hindsight, I can look back on all those strange incidents (over more than a decade) and see quite clearly that they were all part of the landscape of dementia.  But at the time, they seemed just isolated pockets of weirdness, and I grew used to them; it’s only when you step away and view from a distance that the overall pattern emerges. 

Recognising dementia is a difficult business, whether for the medic making a diagnosis or for family trying to care for a loved one.  No two people experience exactly the same cocktail of symptoms (although there may be common themes); those I have described here were relatively low-key in comparison with others in my mum’s case, and surfaced over a very long period of time. 

In subsequent posts, I’ll be looking at some of the more dramatic manifestations, which tend to be less discussed: personality change; emotionally disproportionate responses; decline in language skills; and paranoia, delusion, and confabulation – a confusion of fact and fiction, in which a person believes elements of fantasy to be actual memories.

There is a great deal still to be understood about dementia by both individuals and society.  A first step must be to acknowledge that it’s so much more than just a memory problem.

*American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders (DSM-5), revisions to be published May 2013.

Some behaviour changes , as described by the UK Alzheimer's Society.

A Stranger In My Home Town

My mum used to love Easter. More than Christmas, which was about drawing the curtains and holing up indoors against the dark nights; Easter meant the beginning of lighter evenings and longer days, daffodils in the garden, birds nesting in the eaves - everything fresh and green and full of new life.  

I was always home for Easter weekend, bearing the “Rolls Royce” of hot cross buns and simnel cake from the special bakery down the road from me. We’d sally forth in the car to one of our favourite haunts for a pub lunch or cream tea and potter about at craft fairs and farmers’ markets.  When she got older and more physically frail, we could still enjoy the beautiful scenery on our doorstep: gentle rolling hills, sheep in the fields, and golden stone that seems to smile in the sun.

This year, I could still bring mum cake and hot cross buns.  But they’re surplus to requirements.  She doesn’t register festive days any more, and there are freshly-made cakes* aplenty in the care home where she lives.  I’m grateful for that.  She likes their meringues, cream puffs, and sherry trifle; they keep up her interest in food.  But we’ll never again eat a meal together cooked by one of us in our own home.  And it’s over a year since we’ve been out.

If it were just a question of physical capacity, there would be aids to help. I look enviously at families visiting the residents in the ground floor unit, who might be in wheelchairs, but don’t have dementia. They can go out.  More importantly, they can speak to their loved ones on the phone between visits and anticipate such trips.  

Some people in mum’s unit can still do those things too. But not my mum. Formerly a prodigious talker, she now struggles with the technology and concept of phone conversation. (We take for granted the understanding that a voice on the other end of the line can be the same person we know in real life, just not in the same place, or that a recorded message can’t answer back; a person with dementia may become confused about such things).

With no short-term memory, she can’t look forward to future plans or recall pleasurable incident just past. She can’t remember having been in one room, once she has passed into another. Going in and out of the unit – even downstairs to function rooms or to the gardens in summer – is too disorientating for her.  

It seems unbearably sad for her life to be confined to just two or three rooms and a corridor. So for the first few months of her residence, I persisted with attempts to take her out, naively thinking it would be no different than our regular pre-care home jaunts to country pubs, our favourite restaurants in town, the theatre, or cinema. 

I finally came to accept that it caused more harm than good. In truth, the wider world had already become a threatening blank to my mum, long before she went into care. For some months, I had been shocked to find that she had no recall in conversation of the most familiar places – the main street she’d browsed in daily for 40 years, the restaurants where we ate each week, shops where staff knew her well and always welcomed her for a chat.   

At times, I became frustrated; I simply couldn’t believe that she didn’t know what I was talking about.  How can you forget so completely the everyday local knowledge that binds you to the place where you live?  The network of usage that makes you part of that community?

She’d been a teacher, and when I was a little girl I attended the same school. Before and after lessons, I’d wait in her classroom, sharpening pencils, helping to pin up children’s work on the walls, or playing the glockenspiel; and then we’d head home together. The journey took us through the town centre, where we’d have to change buses. Every day, we’d walk through the department store, sometimes looking speculatively at furniture (one of her perennial obsessions!), or more often lingering in the perfume department.

She would gossip with the assistants, while I was fascinated by the toiletries: not the expensive fragrances from Chanel and Christian Dior, but lemon-shaped soaps by Bronnley, in their waxed paper wrappers like Christmas tangerines; bracing 4711 Eau de Cologne in sprays and perfume sticks that I’d surreptitiously test on my wrist; hippy scent Aqua Manda, in its dark brown apothecary’s bottle, heady with orange and spice and patchouli - and, most exotic of all, Maja.

Maja came from Spain. There was eau de toilette, talcum powder, and soap in a dramatic red, black, and gold box, proud flamenco dancer in full flight. The soap came wrapped in black tissue: unusually khaki-coloured and very grown-up to a young girl, with a subtle, woody, spicy aroma. It wasn’t always in stock, which made it a treasure to find in any other store; and sometime in the 1980s or 90s it was discontinued in the UK.

A few years ago, I was then delighted to find it available online. It would make a lovely Mother’s Day gift, I thought, recalling memories of that time when mum and I were always mooching in town together. So I had it shipped all the way from the US and excitedly presented it to her. She opened it with only mild interest; sniffed and quite liked the perfume; then casually returned the soap to me. I was disappointed and not a little hurt by this reaction.

Looking back, her dementia was more advanced than I had realised at that time. She still functioned well in other respects.  But now I see: how could she recall the memories evoked by that scent, when she already struggled to recall the department store in town, the main street where it stood? These are landmarks known by all who live there, as familiar to us as our own house. And now she doesn’t remember that.

Of course it’s possible the soap meant less to mum in the first place, and that memory from thirty years ago was understandably hazy. But a person without dementia would have remembered something of it when prompted, or had the social grace to cover it up. Dementia just leaves a blank.

I had moved away to London when I graduated in the late 1980s, but continued to visit every other weekend and for longer spells. As mum’s dementia grew worse, I found myself spending more and more time back at the family home – to the extent that I often felt I was living her life more than my own.  That town was as much my home as hers, as much my home as my own district of London.

Suddenly it’s over. I still go to some of those places on my own, but it’s not the same. I can't talk to mum about them, in case it disturbs her fragile sense of where she is now. And with no personal connection, nothing to root me in that community by everyday engagement (stocking up with mum at the supermarket, browsing for clothes together in the town centre, paying her paper bill, taking rubbish to the dump), I’m an outsider.  

All the things we used to do that were bound up with that place – our shared rituals, the life we lived there with my late father – are only in my head now. No-one else remembers.

Dementia, we are told, attacks short-term memory: “they still remember the past”. Well, only selectively in my mum’s case, and only her own past - mostly her childhood or youth, long before my time. My past - and much of my present, the memories we shared of my lifetime - has gone.

A few weeks ago, she asked me out of the blue if I had a husband. I don’t and never have. I laughed it off at the time. But if she has no idea of something so fundamental about me, how much of me does she now remember?

The bereavements of dementia are many, and some are better known. I have come to realise that this cruel disease has not only robbed mum of much of the life we shared - it has left me alone with my own memories and made me a stranger in my home town.

(*This post was written in 2013. Sad to say, by 2016/17 the excellent selection of freshly-made cakes had largely disappeared, due to budget cuts at that home - a common scenario in the current climate of the care "industry".  See my four-part post, Five-Star Hotel, Five-Star Care?  In May 2018, I moved mum out to another home. 

She no longer knows me at all. You can read about our more recent situation in this post, An Act of Remembrance - Update 2019.)

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.