Can you live well with dementia and suffer at the same time?

First, read Kate Swaffer’s poem. “Who’s suffering?

When the media fires bullets of suffering in their magazines (quite literally), it is not clear who is the suffering by, what they’re suffering, how they’re suffering, when they’re suffering, and why they’re suffering.

Many readers suffer at this lack of clarity.

It’s pretty clear this narrative has got extremely distorted for no clear reason. What do the caring professions or the media have to gain by describing so much suffering?

And are people really suffering as purported?

Are there any randomised placebo-controlled drug trials where the relief of “suffering” in #dementia is a reported outcome?

Kate Swaffer (@KateSwaffer)’s poem conversely is a very helpful contribution, based on a personal experience of living well with a dementia.

“Rhetoric referring to Alzheimer’s disease as ‘the never ending funeral’ or ‘a slow unraveling of the self’ implies that diagnosed individuals and their families alike are victims of a dreaded disease.”

So comment Beard and colleagues.

“The fact that the words Alzheimer’s disease conjure up images of a hideous, debilitating condition demonstrates that an Alzheimer’s diagnosis can be both “a stigmatizing label and a sentence”. When depicted as a ‘living death’, Alzheimer’s can have countless social-psychological consequences for those diagnosed. Within a medical model, the relatives of persons with dementia are ascribed the role of ‘caregiver’ with a focus on the associated stressors or ‘burden’. Subsequently, health promotion efforts have historiiccally positioned family members as the ‘second’ or ‘hidden’ victims.”

Of course, this discussion is not confined to Alzheimer’s disease.

It is not uncommon for people who love people living with advanced dementia to have a miserable time, and suffer from that.

Alzheimer’s disease is the most common type of ‘dementia’, a disease of the brain. It’s not just about memory, although memory problems can be a common feature of Alzheimer’s disease early on in particular.

There is more to the person than the dementia. It’s possible to live well with a dementia. And dementia is not necessarily associated with ageing.

But some critics of ‘living well with dementia’ have attacked the concept saying it is trying to airbrush or sanitise suffering. I hope that this is not a widespread belief, as it is not true.

Across a number of jurisdictions, the word ‘sufferer’, like ‘victim’, is avoided in common parlance and academic papers when referring to people getting on with their own lives.

The term ‘live well with dementia’ is not indeed to enforce a degree of pleasantry on the lives of people. Contentment is not compulsory. But the term conveys a notion which is a pure and simple reaction to people being written off on the receipt of a diagnosis of dementia.

We owe much of the current drive in policy to ‘person centred care’ from the seminal work of the late great Prof Tom Kitwood on personhood. Persons living with dementia have been classified as “empty shells”, a label that may contribute to the development of paternalistic attitudes and behaviors toward care.

Kitwood suggested that people with dementia are often depersonalized and actively disempowered.

Research into the “self” in dementia is important for a number of reasons. It is important to understand how people with dementia experience their sense of self because this has implications for how people cope with the illness, how they relate to others, including friends, family, and health professionals, and what any types of intervention might be appropriate for them.

One person, interviewed by Wendy Hulko, described the experience as “hellish”.

But it turned out that this word was chosen partly out of word finding difficulties.

“Well, having um a difficulty coming out with the right words for example or phrases or um having difficulty with uh numbers and um dates, times, um having difficulty coming up with um, difficulty um, coming up with just a common expression uh, or um even words that are very frequently used by anyone without the disease and um having difficulty coming up with just ordinary expressions…”

Several of the participants dismissed the significance of having dementia, some focusing on the lack of impact it had on their lives. Several of the participants tolerated dementia, noting the inconvenience it caused and downplaying the negativity associated with it.

Despite extremely powerful national advocacy organisations founded over a quarter century ago in the United States and the United Kingdom, the voice of people with all forms of dementia has been surprisingly slow to emerge.

A recent exception to this has been the Dementia Alliance International.

The medical model has unintentionally forced a narrative in the media which does present people living with dementia in the positive light. Such ‘ringfencing’ of the person with dementia positions them as withdrawing from social life rather than considering how their social roles may have been withdrawn from them, which demotes them to ‘patient’ or ‘dementia sufferer’.

Such biomedical reductionism, arguably, can, therefore, create additional obstacles for diagnosed individuals and their families.

People with dementia, like all of us, undoubtedly have “rough spots” along an individualistic path of dementia, but the person is more important than the diagnosis as reflected in strategies for circumventing the rough spots.

There are typically personal, interactional, and environmental factors that caused them difficulties. Strategies included concrete activities, emotional responses, and environmental adaptations.

A number of devices can be used cognitive aids, made various modifications, garnered assistance from others’ engagement, akin to how people like me live with physical disability.

And often the language itself is intensely stigmatising.

Take for example this example by Dupuis and colleagues.

Such current language and discussion around “challenging behaviours” have the effect of blaming persons with dementia for behaviors and labeled persons as violent, aggressive, disruptive, challenging and so forth. This was hurtful and stigmatising and did not reflect the meanings of the actions of persons with dementia.

stigmatising language

Conversely, it is quite often – and incredibly politically incorrect to say so – a failure by the care or support network to understand communication by a person with dementia amidst intense frustration.

Sarah Lamb notes at the beginning of this year that the current North American “successful ageing” movement offers a particular normative model of how to age well, one tied to specific notions of individualist personhood emphasising independence, productivity, self-maintenance, and the individual self as project.

However, Lamb concludes that the “successful ageing” narrative “might do well to come to better terms with conditions of human transience and decline, so that not all situations of dependence, debility and even mortality in late life will be viewed and experienced as “failures” in living well.”

This thought is bound to raise eyebrows.

Frank

An emerging political approach suggest that individuals with dementia are viewed as having transgressed “core cultural values—productivity, autonomy, self-control, cleanliness—and these failures damage the ‘victim’s’ status as an adult, and indeed, full humanity” (Herskovits, 1995: 153).

In articulating a “political” model of dementia, Susan M. Behuniak suggests that one is inviting very different meanings:

“everything from absolute control over the individual to a total lack of public policy, from an emphasis on individual rights to that of social responsibility, and from laws that draw absolute lines to those that accommodate shades of grey.”

Although dementia is not traditionally viewed as a power question but as a medical condition, power in its most traditional of formulations can be seen when debates arise over who  should decide matters involving the individual with dementia.

This is, I feel, also an issue when we talk about a ‘carer’ or ‘support’ for a person with dementia. Whilst not as unsubtle as the word ‘sufferer’, there is an implicit power relationship there for me.

Chris Roberts [@mason4233], one of the @DementiaFriends, himself a card-carrying member of the ‘living well with dementia’ club has often remarked as follows:

Roberts

So it is possible to suffer and live well with dementia.

But once you’ve met one person with dementia, you’ve met only one person with dementia.

But hold on.

Carly Findlay, like Chris and Kate, also puts it beautifully, this time writing from Melbourne about “ichthyosis“.

In her piece, “I get told I suffer… I don’t suffer.”

Ask others for their opinion if possible, or those closest to them.

It’s very important that no views are simply shouted down, particularly since it will be an important strand of the English dementia strategy  (probably from next year.)

 

 

Further reading

Herskovits, E. (1995). Struggling over subjectivity: Debates about the ‘self

Meeting other people living with posterior cortical atrophy

Even The Man Who Mistook His Wife for a Hat, from Oliver Sacks’ famous book, has since been speculated to have suffered from posterior cortical atrophy (PCA).

A dementia is not a natural part of ageing.

Dementia is caused by diseases of the brain.

It’s not just about losing your memory.

It’s possible to live well with dementia.

There’s more to a person than the dementia.

Sue Stephen, one of the founding members of the Dementia Alliance International (DAI), spoke about how she came to be diagnosed with PCA.

This is one of the latest additions on their blog, which I strongly recommend.  The DAI is an unique group of individuals with a strong sense of solidarity, who live with one of the various types of dementia.

“I had been noticing myself for the last few years that I was having visual issues… very bad glaring.. when I tried to read..”

She put it down to stress, but she still went ‘to get [my] eyes tested.’

And this went on for a few years. Interestingly, she reports this delay in diagnosis as rather typical for many people finding a diagnosis of PCA.

Tests for dementia of the Alzheimer type, typically initially shown up by problems in short term learning and memory, were negative.

When she was eventually given a diagnosis, she was told, “That’s it. There’s nothing I can do. Here’s a prescription for Aricept. See you in six months.”

But she described being shocked, and she had no idea what PCA is/was.

“I lost all certainty in my life. How do I make decisions in my life?”

She then sat on her month doing ‘research’, but reported ‘three wonderful things’ which came out of her research.

She found a list of symptoms which matched what she had been experiencing. “That was really good”. This enabled her to see her GP who then went referred her onto more suitable specific tests, confirming the diagnosis.

That’s one of the slight paradoxes about the way we approach a fellow citizen of ours living with a dementia. Nobody wants to be defined by any medical conditions they live with. They do not wish (rightly) to consider themselves as a collection of diagnoses.

But it is often reported by people living with conditions how it can be both a blessing to know what might happen but also a burden to know something might happen, with this information resulting from a clinical diagnosis.

She then reported discovering the work of Sir Terry Pratchett, who is living well with PCA, still writing books.

A third thing which she reports is finding a group of people on Facebook of people with posterior cortical atrophy. It’s a closed group where people can share in private “scenarios”.

“I could see in the future what symptoms might be. I look at symptoms, and I think if this happened to me, what could I do now to help?”

Stephen reports sharing these stories really helped.

Terry Pratchett went to see other people living with posterior cortical atrophy in 2010, a form of dementia.

Pratchett is an example of an individual who has shown that it is possible to live well with dementia.

Pratchett admitted he was apprehensive about the meeting, as he said it was like ‘seeing into the future’.

One person in the meeting, “Anything coming through the postbox, I can’t read. Susan has to do everything from cutting my nails to putting my shoes on. This disease.. or whatever you call it, changes your perspective.”

“It didn’t happen – it evolved.”

Pratchett though admitted despite his fears he enjoyed the meeting.

“I can see why people enjoy meeting up”

He had dinner with Graham Doggett, who is an 70 year-old author, and academic who has written books about quantum chemistry, and his wife.

“Susan is the gardener. If I help her, I can never find the wretched branches in the air to prune. They disappear.”

“I was doing computing since 1959. That’s gone.”

“I used to play piano up to grade 7. Gone.”

“Reading, writing, gone gone”.

When the term ‘living well with dementia’, one of the main disclaimers on that is that the person living with one of the dementias will have their life before to compare their experience to.

And this is bound to impact upon one’s own personal perception of living with dementia. Unless you bother to find out about the past of a person, in relation to his environment, you will not be able to understand his or her world.

The symptoms of PCA can vary from one person to the next and can change as the condition progresses.

The most common symptoms are consistent with damage to the part of the brain at the back of the head, an area responsible for processing visual information.

Consistent with this process are slowly developing difficulties illustrating its slow and progressive nature due to a disease of the brain.

Now you’re even able to follow it using sophisticated ‘imaging’ of the brain.

PCA imaging

These difficulties include visual tasks such as reading a line of text, judging distances, and  distinguishing between moving objects and stationary objects.

Other symptoms include an inability to perceive more than one object at a time, disorientation, and difficulty maoneuvering, identifying, and using tools or common objects.

Some people can experience hallucinations.

Yet further symptoms can include difficulty performing mathematical calculations or spelling, and many people with PCA experience anxiety, possibly because they know something is wrong.

In the early stages of PCA, most people do not have markedly reduced memory, but memory can be affected in later stages.

This illustrates how this particular dementia is not just about memory.

Age of onset is typically 50-65, demonstrating why dementia is not simply about ageing.

Both Stephen and Pratchett demonstrate by a country mile while there are more to people than their dementias.

If you’d like to find more about dementia, you can do a short 45 minute session close to where you live in England (and now in other parts of the UK). The initiative is run by the Alzheimer’s Society, but is a Public Health England initiative. To find out more about this initiative called “Dementia Friends”, please go to their website.

There’s more to this initiative than the badge you’ll receive in the process, but this initiative is all about improving understanding in the general population about the dementias. I hope you will wish to learn more.

People with PCA are are at risk of being let down by ‘traditional dementia support groups’.

That is partly because they are younger and face different challenges, and partly because the activities offered in day centres  puzzles, large-font books—are visual and thus actively unhelpful for people with PCA.

PCA is not new to the research community.

Already in 1902, the Czech psychiatrist Arnold Pick mentioned a woman’s inability to see and grab a lit candle held in front of her face in his essay “Ueber eine eigenthuemliche sehstoerung senile dementer,” Jahrbuecher f. Psychiatrie u. Neurol., see excerpt.

Several attempts at defining criteria for diagnosis exist.

The neurologist Frank Benson at the University of California, Los Angeles, coined the term while describing the pattern of symptoms in five patients (Benson et al., 1988).

Later, Mario Mendez, also of University of California and San Francisco proposed clinical diagnostic criteria arguing that PCA is its own syndrome, not simply Alzheimer’s disease with visual symptoms (Mendez et al., 2002).

The English dementia strategy is mindful of the needs to develop communities supportive of the needs of people living with PCA, of the need for high quality research research into PCA, and to think how people living with PCA can be best supported professionally and personally.

It’s not only people with posterior cortical atrophy who experience problems with vision, however. This is very important to be aware of.