An Embuggerance

Author Terry Pratchett has revealed that he has been diagnosed with a rare form of early onset Alzheimer’s disease.

I can only imagine how distressing it must be for someone who has spent his life as a wordsmith to start feeling gaps in that remarkable language engine.

I’ve seen several elderly relatives progress along the dementia path, some with Alzheimer’s and some with other causes. It’s a terribly distressing disorder in the early stages, when the person is very aware of the gaps in their memory. Sometimes the later stages are easier to deal with, as although the person we knew has been transformed by the disease and we mourn the loss to ourselves, at least they themselves are often no longer distressed by their condition.

This is largely the situation for US Supreme Court Justice Sandra Day O’Connor, whose husband, aged 77, has now found a new partner in his nursing home and no longer appears to remember O’Connor, although she visits him regularly. O’Connor has decided that she would rather see him happy with his new relationship than disrupt the comfort he finds in it amongst the confusion of his dementia, and wishes them both well.

Experts in Alzheimer’s disease say many people are surprised to learn that patients continue to have rich emotional lives.

“People still have their personhood at the core of who they are,” said Dr. Peter Reed, senior director of programs at the Alzheimer’s Association. “So the effects [of the disease] do not diminish the individual’s need for social interaction, it doesn’t diminish their need for dignity and meaning in their life.”

Alzheimer’s typically causes an individual to forget all but those they see near them regularly, he added. “So, people learn familiarity with the people around them,” Reed said, and with that, “they become more comfortable.”

The persistence of emotional needs after declines in memory makes some sense on a neurological level, another expert said.

“The Alzheimer’s pathology starts in the memory and learning areas of the brain and then spreads,” said Dr. Gary Kennedy, director of geriatric psychiatry at the Montefiore Medical Center in New York City. “The direction and extent of the spread varies tremendously from one person to the next. For some, their thinking and memory are largely gone, but their emotional expressiveness may be relatively intact.”

As the disease progresses, many Alzheimer’s patients become disinhibited emotionally and sexually, which adult children often tend to find more distressing than spouses do. Many nursing homes deal with this as if it is a misbehaviour, sadly, and medicate the patients simply to make life easier for themselves. This leads often to adverse pharmaceutical reactions to antipsychotic medications, for example, which may make the person more aggressive rather than quieter, which can then lead to a distressing and escalating cycle of aggression and medication. Sometimes people who just needed to be supported in their emotional expression end up overmedicated and then discharged from nursing homes back to a family which already knows that they cannot handle the extra care alone.

A lot of this distress that people with Alzheimer’s and their families are subject to could be alleviated if the disease was generally understood better, and if the work of carers outside nursing homes for their loved ones with the disease were better supported. The festive season is often an especially difficult time. If you know someone caring for an Alzheimer’s affected person, think if there is something helpful you could do (a home-cooked meal or two for the freezer, perhaps? offer to give them some respite time for a few hours while they go and do something just for themselves? or so that they can just get the Xmas shopping done?). Carers for people with other disorders could do with some relief as well, of course. Any of our commentors who are carers, please chime in with something that you would find helpful at this time of the year especially.


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17 comments on “An Embuggerance
  1. Darlene says:

    What a good post. Thanks for it. Good to learn something about Alzheimer’s.

    What an interesting situation O’Connor finds herself in. It must be painful for her, but she is responding in a very thoughtful way.

  2. Iain says:

    Having watched some one I loved decline with dementia all I can say is that the death of a demented person is a blessing that in many cases is not welcomed soon enough.

  3. philiptravers says:

    Boring people just accepting medical diagnosis here.They should be treated neuro dietetically ,be taught biofeedback matters associated with muscle and brain coordination,and find out about Deprenyl,and there is a Queensland Psychiatrist who specialises in nutrient solutions,and ,should be contactable through Nexus Magazine,if they cannot find him elsewhere.That man,should be the Federal Governments main consultant on aging.He is qualified enough,and it is plainly obvious that the NH&MRC are full of medico types etcetera who just dont know what they are allowing through because of all the calls to stop the use of many proprietary drugs.

  4. Sam Clifford says:

    Poor Mr Pratchett 😦 I thoroughly enjoy reading his books and hope there are still more to come.

  5. […] crossposted from LP in Exile […]

  6. tigtog says:

    Sam, PTerry is working on two books as we speak, and hopes to work on more next year. He aten’t ded yet.

  7. sorcerer says:

    I have seen too many people decline physically, intellectually and psychologically from dementia illnesses to believe they are anything but a scourge. It is the inexorably progressive rotting of the brain after all,and the brain and mind are the seats of who we are.

    We are unfortunately going to get more and more of these sub-textual fake “feel-good” messages about these dreadful diseases from Americans as the ageing population grows and lives longer, and more and more admired contributors to society such as Terry Pratchett are cut down .

    Dementia is not some sort of emotional “life-stage” any more than cancer or AIDS or cardio-vascular disease is. We do not celebrate bizarre or delusional behaviour in people with bi-polar disorder or schizophrenia.

    There is nothing “feel-good” about Alzheimer’s and its relatives.

    Highly educated people, formerly living full and active lives, rendered helpless and incontinent despite the best efforts of nursing home staff, infantilisation caused by the limiting nature of these scourges, the eventual inability of the sufferer to communicate pain or discomfort from other causes (people with one of the dementias always die of something else, and the something else can often be painful diseases like bowel cancer) – hence leading one to the conclusion that the best service one can give to oneself and one’s loved ones is to arrange for one’s timely voluntary euthanasia in the event of a dementia diagnosis.

  8. Debbie(aussie) says:

    I hope Terry P’s disease is a very slowly progressive. The world would be a much less enjoyable place without his insightful and funny (often hilarious) send up in the discworld universe.

  9. Tony D says:

    “Pratchett does not have Alzheimer’s. Early onset AD is not “very rare” and does not cause pseudo-stroke. Exactly what he does have is not yet clear and the progression, although suggested by his letter to be inevitable, will be dependent on the exact diagnosis. Bottom line, all hope not lost. Await details.”

    From a neurology medico mate who specialises in strokes and like.

  10. philiptravers says:

    I hope the sorcerer hasnt got an apprentice,that way if a disease like Alzs becomes an experimental model for being a painful for victim disease,by apprentices,then,stirring the pot, now might find a bats life saved.I can only see Alzs being painful if someone trips over their pyjamas,head first whilst slipping on a banana skin absent mindedly thrown in front of the said person.Then trying some backward swimming stroke towards the hard surface.Oops a daisy, rather than premature pushing up daisies.People in research I have read are looking at those moments to design a way out of those mishaps.I think I actually know the states of Alzs because I was once a dope bore…and being stoned at times ,looking back,is so bloody old and non-active in brain.Then there is trying to appear normal,whilst brain and feelings are distinctly not the same in synchronicity.Luckily there were Police around to make one paranoid so as to think a little bit,which was always extremely difficult.I bluffed my way through that stuff to now stuff!?

  11. Cliff says:

    That’s terrible to hear… and just when the scientific community was starting to take his theories seriously, too: [link]

  12. Cliff says:

    Sorry… that url didn’t format properly.

    Moderator note: fixed – tigtog

  13. Cliff says:

    Actually… I don’t think the turtles all the way down theory was Pratchett. Apologies.

  14. Klaus K says:

    That theory comes from a story about William James. James was a great popularizer of science, and on one lecture tour he was accosted by a woman in the audience who suggested that James was wrong about the planet earth and the composition of the solar system. She suggested that the earth was on the back of a giant turtle. James asked her what was beneath the turtle, and she replied that it was another turtle. ‘And what about the second turtle, what is beneath that?’ he asked. The woman replied: ‘It’s turtles all the way down’.

  15. I think O’Connor’s cavalier approach to marital infidelity sets dangerous “precedent” for strong Christian families in similar situations. Her husband should be isolated for the sake of his vows. It sickens me to think that a mental illness can legitimize the abdication of a basic religious mandate. If he wants to pursue nursing-home strange, he needs to file for a divorce.

  16. Megan says:

    “We are unfortunately going to get more and more of these sub-textual fake “feel-good” messages about these dreadful diseases from Americans…” Too right Sorceror and I hope there are better laws for euthanasia in place if I get Alzheimer’s disease. Bugger living with it!

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