Tag Archives: Editor: Kate Swaffer

Day 2 at the United Nations in NYC

Screen Shot 2016-06-16 at 5.43.07 PMDAI Member Mary Radnofsky has been sending journal like entries reporting on her time at the United Nations event in New York City. Whilst I suspect we have exhausted her as her notes are starting to read like the final stages of a thesis, she has represented us wonderfully well.

Living with dementia has its many daily challenges, but to then be amongst mostly strangers, many who probably have very old fashioned stigmatising attitudes about people with dementia, I have nothing but admiration for her. Mary, we all thank you for your considerable effort.

On June 15, 2016 Mary attended a COSP Morning side events promoting the rights of persons with psycho-social and intellectual disabilities, which was sponsored by Inclusion International. There were back-to-back sessions with no real breaks, because she also had to catch people in between, but she has been busy sending updates.

Here are some of Mary’s remarks about the first session:

Moderator, Vladimir, echoed the disappointment that no women were voted in. Applauded that Robert Martin was elected, as first deaf person, yes, but that everyone that was elected was a man.

Fatima from Kenya, from Inclusion International (II) talked about the Psychosocial (psd) approach to people living with disabilities (plwd); most plwd live at home, and the families receive little or no support. Communities that are designed to be inclusive will be more welcoming to all families. Self-advocacy is necessary if people are to become included in their own communities. They must raise their voice.

Also, families need financial and support network.    But they mostly get information from doctors, so they get mostly only a medical approach, from the time their children are a very young age. So it stays medical. We need to focus on community development efforts that ensure citizens are included. It is not enough to just open the doors. This approach is not sufficient to reach people in remote areas.

This sounds no different to how people with dementia are treated.

Mary wrote of a real contrast between the great Italian efforts and those who argued it was more cost effective to keep disabled people institutionalised. Wow, who would think those attitudes are still even in existence, but to think at an event like this they are prevalent is mildly concerning.

For example, the Italians have closed all mental hospitals. Robert Martin called for the closure of all institutions around the world. It’s so hard, but on behalf of people surviving Psychiatry, he wants to do this. People do not need to be segregated. They are citizens.

In Italian parliament just adopted new law yesterday: What about the “after” i.e. what happens to the person with disability when parents are no longer there? Plwd always face stigma. Many challenges.

Now, mental hospitals must be closed or used differently. The whole system should be concentrated on community-based facilities. Wants to join forces for a better world.

There was discussions about Psychosocial disabilities (Psd) reported by Mary here;

Yenni Diamente talked on What does it mean to have psychosocial disability in Indonesia? Shackling. Psychotic Drugs. Govt pays $400/month. But the need for drugs is not the problem for these people. They need a job, they need housing. But they take the anti-psychotic drug, and still have no job or home. And they have shame. Medical treatment is only a small part of the solution. Don’t put all the money in that box! A person with psdis has a life, just like anyone else. We need all the support that everybody needs. Meds are only a small part of that.

People see us as incapable of making our own decisions. We are told we have to take the meds. But it makes us feel sick or zombie, and we don’t want to. But in Indonesia, we don’t have the right to say no. We lose the right to vote, to get inheritance, we have no rights as citizens. Can’t open a bank account. Treated like (worse than) a child. Opens up the system to abuse and violence.

Psd still not considered part of disability movement. Psychiatrists talk ABOUT you, and you’re not invited to speak; they speak on your behalf. If you want to talk about psd, don’t talk to psych, talk to the person! That’s the most important message.

Interestingly though, this morning’s panel did not have a person with psd.

Wow, this is almost no different to people with dementia.

And in contrast to the progressive thinking in Italy, one President of an employment agency said that it would cost more to put the people with disabilities (PWD) in community programs, and that it would be dangerous to take them out of institutions and put them at risk of dying in the streets.  He used fear-mongering, unsubstantiated arguments about the cost being higher to care for them in a community than in an institution, and that it would not be possible to follow up with them if they were just living in neighborhoods, and not in institutions where they can be cared for

Perhaps attitudes like this are why people with dementia are still being institutionalised? We look forward to more instalments from Mary, as we pursue our place within the disability community, and claim our human rights in this space as well. No one was offering us a human rights based approach in the dementia sector, so let’s hope the disability sector is the right approach. I certainly think so.

So, onwards and upwards through the fog, as we all work towards a better world for people with dementia and our families.

World Rocks Against Dementia (W.R.A.D)

One of our members, Norrms Mcnamara is a global advocate for dementia, and as a man from the UK also living with a diagnosis of Lewy Body dementia, he has been very active in working to help reduce stigma of dementia. March 19 is his World Rocks Against Dementia (W.R.A.D) day, and you can hear him passionately invite you to become a part of it. Norrms is also co-founder of The Purple Angel awareness campaign. Congratulations and thanks Norrms for your hard work for all people with dementia Normms.

Susan Suchan on living with dementia

This week we ar sharing the first of our video series of our members speaking out about living with dementia, about how they feel, and how others can better support them. Special thanks to Susan Suchan for sharing this with us. You can read more of her story here.

Dementia Friendly Communities Defined by Nicole Batsch

Nicole Batsch has over 18 years experience in developing and supporting ageing and dementia care programmes across the US and globally. She is currently obtaining her PhD from King’s College London and is a consultant with Alzheimer’s Disease International.

Nicole presented to Dementia Alliance International (DAI) members and supporters recently at our A Meeting of the Mind Webinar series: “Dementia Friendly Communities Defined – Key Components for a Successful Start”

If you are a in paid employment, DAI asks you make a donation of $US35.00 to view it, the fee charged if you had registered to attend on the day. Please make your donation here… Thank you.

This also allows us to continue to support you by providing these educational webinars, with eminent international speakers.

Whilst it is freely available here, we are a fledgling not for profit group, working to support people with dementia to support themselves, with no permanent funding. Your donations help people with dementia support themselves.

Dementia Alliance International (DAI is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership of Dementia Alliance International is free, and open to anyone with a medically confirmed diagnosis of any type of dementia. Or you can subscribe to our newsletter or weekly blog.

Visit us at www.infodai.org to subscribe to our blog and newsletters,  or become a member if you are a person with a medically confirmed diagnosis of a dementia at www.joindai.org

Research roundup on memory and dementia

Slide7For our last blog post in January 2016, we are indeed lucky Dr Shibley Rahman has once again found time in his incredible schedule as an academic and author to write this research wrap for us.

Thank you Shibley, as without volunteers like yourself, and others, it would be difficult indeed to offer the kinds of services and information we are able to offer to our members, all people with dementia, and which are all provided at no charge to them.

Shibley writes:

In this ‘research roundup’ for Dementia Alliance International, I’d like to describe some of the latest developments in memory research.

I will explain how they relate to some classic historic research.

And also I explain why this is relevant to our current understanding of dementia.

Memory impairment is a prominent defining feature of Alzheimer’s disease, yet the degree to which the profile of memory impairment is uniform across patients is not fully resolved. Alzheimer’s disease is the most common form of dementia worldwide.

Recall or retrieval of memory refers to the subsequent re-accessing of events or information from the past, which have been previously encoded and stored in the brain.

Recognition is the association of an event or physical object with one previously experienced or encountered, and involves a process of comparison of information with memory, e.g. recognising a known face, true/false or multiple choice questions, etc.

That there’s a difference has been interesting to cognitive neurologists for ages.

And crucial when it comes to developing new tests in the clinic to develop and distinguish some types of dementia.

Intriguingly, some researchers – Craik and colleagues – recently described a person “VL” (published 2014).

VL was a female who exhibited frequent episodes of erroneous recollections triggered by everyday events.

Based on neuropsychological testing, VL was classified as living with dementia, and indeed was given a diagnosis of probable Alzheimer׳s disease.

Her memory functions were uniformly impaired but her verbal abilities were generally well preserved. A structural MRI brain scan showed extensive areas of gray matter atrophy particularly in frontal and medial-temporal (MTL) areas of the brain.

Results of experimental recognition tests showed that VL had very high false alarm rates on tests using visual pictures, faces and auditory stimuli, but lower false alarm rates on verbal tests.

This is interesting from the point of view that visual and verbal memory might be organised differently in the human brain.

On a different note, it has been unclear to what extent memory is affected in another type of dementia known as frontotemporal lobar degeneration.

Since persons living with this dementia usually have atrophy in regions implicated in memory function, the frontal and/or temporal lobes of the brain, one would expect some memory impairment (see for example and colleagues, 2008).

And this prediction has been generally borne out in clinical observations.

There’s a part of the brain which historically has been associated with aspects of memory – the hippocampus.

This is really classic work.

Scoville and Milner (1957) described the seminal case of H.M. who fell off his bicycle when he was 7 years old, injuring his head. H.M. began to have epileptic seizures when he was 10. By the age of 27 the epileptic attacks prevented him from living a normal life.

Scoville performed an experimental surgery on H.M.’s brain to stop the seizures.  Specifically he removed parts of HM’s temporal lobes (part of his hippocampus along with it). The seizures stopped but H.M. had amnesia for the rest of his life.

This case study of H.M. provides information on how particular brain areas and networks are involved in memory processing. This helped scientists to formulate new theories about memory functioning.

H.M. could no longer store new memories (anterograde amnesia). Most of his memories from before the operation remained intact (partial retrograde amnesia).

It’s from work like this that people have been drawn to believe that the hippocampus play a critical role in converting memories of experiences from short term memory to long term memory (“the permanent store”).

H.M. was able to retain some memories for events that happened long before his surgery. This indicates that the medial temporal region with the hippocampus is not the site of permanent storage in itself. It rather seems to play a role in how memories are organised and then stored elsewhere in the brain.

All of this is fascinating in relation to the very commonly held observation about the decline of memory in people living with Alzheimer’s disease: that memory for new events declines comes before the decline in old memories.

This is introduced, indeed, in the ‘bookcase analogy’ of the “Dementia Friends” information sessions which originated in England.

Bringing this all right up to date, Patai and colleagues have recently investigated further the role of the hippocampus part of the brain (2015).

The availability of a large cohort of patients who had sustained relatively selective hippocampal damage early in life enabled us to determine which type of mnemonic deficit showed a correlation with extent of hippocampal injury.

They assessed their patient cohort on a test that provides measures of recognition and recall that are equated for difficulty and found that the patients’ performance on the recall tests correlated significantly with their hippocampal volumes.

However, they also found that their performance on the equally difficult recognition tests did not and, indeed, was largely unaffected regardless of extent of hippocampal loss of volume.

The results provide new evidence in favour of the view that the hippocampus is essential for recall but not for recognition.

So, the story continues. This excellent research benefits our understanding of dementia, and how we can develop new ways of identifying and people living with memory problems “living beyond dementia” (Swaffer, 2015).


Craik FI, Barense MD, Rathbone CJ, Grusec JE, Stuss DT, Gao F, Scott CJ5 Black SE. VL: a further case of erroneous recollection. Neuropsychologia. 2014 Apr;56:367-80. doi: 10.1016/j.neuropsychologia.2014.02.007. Epub 2014 Feb 20.

Patai EZ, Gadian DG, Cooper JM, Dzieciol AM, Mishkin M, Vargha-Khadem F. Extent of hippocampal atrophy predicts degree of deficit in recall. Proc Natl Acad Sci U S A. 2015 Oct 13;112(41):12830-3. doi: 10.1073/pnas.1511904112. Epub 2015 Sep 28.

Scoville WB, Milner, B. Loss of recent memory after bilateral hippocampal lesions. J Neurol Neurosurg Psychiatry. 1957 Feb;20(1):11-21.

Söderlund H, Black SE, Miller BL, Freedman M, Levine B. Episodic memory and regional atrophy in frontotemporal lobar degeneration. Neuropsychologia. 2008 Jan 15;46(1):127-36. Epub 2007 Aug 9.

Swaffer, K. Living beyond dementia website https://livingbeyonddementia.wordpress.com (accessed 27 January 2016).

Thoughts on dementia by the late Dr Richard Taylor

Screen Shot 2015-07-28 at 10.18.21 amThe late Dr Richard Taylor, a founding member of Dementia Alliance International (DAI), impacted the lives of literally thousands of people around the world. Whether it was a person with dementia, a family care partner or professionals, his web was huge.

For our new members, I felt you may also benefit from reading them; I found the following two excepts on Dr Google not too long after my diagnosis, and recall feeling like they almost literally ‘saved my life’ from the downhill spiral of Prescribed Disengagement®™. I have not doubt others who knew and loved Richard, and still miss him greatly, will also enjoy reading words from his early days after the early days following his own diagnosis of younger own dementia.

Finding the right words

After a lifetime serving people with mental illnesses, writing helps this psychologist and Alzheimer’s patient make sense of his own mind.

By Amy Novotney
Monitor staff
Print version: page 24

For more than 40 years, Houston clinical psychologist Richard Taylor, PhD, helped troubled teenagers gain control over drug and alcohol addictions and curb suicidal thoughts. Today, he serves a new troubled client: himself.

In 2002, neurologists diagnosed Taylor, then 58, with “dementia, probably of the Alzheimer’s type,” and for about three weeks, the psychologist cried every day, he says. But rather than join the nearly 40 percent of people with Alzheimer’s disease who become clinically depressed, Taylor began writing about his fears-and triumphs-as a way to “gain control over what was happening between my ears,” he says.

“Writing became my therapy without a co-pay,” Taylor recalls in one of 82 essays he wrote for his book “Alzheimer’s From the Inside Out” (Health Professions Press, 2007). “I wrote to reassure myself that some of the old me was still there, because I was in transition in ways no one seemed to understand.”

His narratives address common questions such as “What is it like to have Alzheimer’s disease?” (Answer: like he’s looking at the world through his grandmother’s lace curtains) and his fears and concerns for an uncertain future. And while a piece that would have taken him 10 minutes to write pre-dementia often takes him 10 hours these days, the work helps Taylor better understand himself.

But it wasn’t until he shared one of his essays with a friend-also diagnosed with early Alzheimer’s-that Taylor realized that others with the disease shared his concerns, and he decided to take his essays mainstream. Since the book’s publication, Taylor has learned that he isn’t the only person with Alzheimer’s disease to conclude, after one too many failed attempts at buttoning his shirt correctly, that the shirt was “broken,” as described by his granddaughter in one essay. Nor is he the first to find that his mind has been full of “puddles” since the “tsunami of forgetfulness” cascaded through his brain. But Taylor might be the first to say it so eloquently.

He’s now a public advocate for the more than 5 million Americans diagnosed with Alzheimer’s disease. He speaks nationally on behalf of patient involvement in treatment decisions and edits a quarterly newsletter for people with early Alzheimer’s and their caregivers.

Having sat on the clinician’s side of the couch himself, Taylor doesn’t hold back in his plea for help from his former profession. He says he’d like to see psychologists get more involved in counseling and treating people with Alzheimer’s, especially in the disease’s early stages, and move away from viewing advanced patients as half empty.

“We’re always a whole person in our own minds,” Taylor says. “Psychologists should be supportive of people’s wholeness-their all-rightness.”

Is this the end of the beginning or the beginning of the end? Print version: page 25
Excerpt from an essay by Dr. Richard Taylor

“I am scared I am running out of usable time. Usable in the sense that I am using it now. I know I am not at the same level of general competency this January as I was last January. I am more dependent on others for assistance in performing the daily activities of living my current life. Clearly I could not keep this pace of activities without my spouse cleaning up behind me, reminding me to do this or that, asking if I wanted to do this or that. Taking care of me when I can’t, and helping me to take care of myself when I need help. Her patience is both generous and essential.

I have good days and bad. Good hours and bad. Good moments and bad. There is no predicting when or how the bad ones will come, except when I am very tired. Sometimes I am aware I am floundering and cannot seem to hold myself together. It is strange watching yourself misdial a phone number, time after time after time. Look for a name and then forget what I was looking for right in the middle of my search. Stand up from my chair to do something and not have a clue as to what it was. Most dangerous for me are the moments I do not understand, but think I do, or do not remember. I say things, I tell people things, I think I understand situations that are not true, a little true, or from out in left field, and the worst part of it is I do not know when each of these moments are happening. Will I do something on this date? Sure. Except I wrote it on the wrong month in my calendar and did not find out for three weeks. Can I do this? Of course! When I really did not understand what was being asked of me, and I just said “yes” for reasons that only Dr. Alzheimer knows.

Tie these all together; multiply them by 25 and you have an insight into my days. There is of course lots of time between the events, when I cruise along acting, and sometimes thinking like there is nothing wrong, until SPLASH-another glass of ice water in my face, compliments of Dr. Alzheimer.”

Don’t forget, if you haven’t already you can register here for Dr Al Powers Webinar  Living with dementia: new perspectives next week.


Editor: Kate Swaffer

Human rights update, January 2016

Screen Shot 2016-01-14 at 11.57.45 am

Our human rights and disability rights advisor, and DAI member Professor Peter Mittler has agreed to write a monthly update on the progress (or not) that is happening in relations to the recognition of people with dementia under the United Nations Convention on the Rights of Persons  with Disabilities. Thank you Peter, of your expertise and generosity to our members, and to all people with a diagnosis of dementia.

Dementia Alliance International (DAI) and Alzheimer’s Disease International (ADI) are working closely together towards recognition of people with dementia as people living with disabilities, under the United Nations Conventions of the Rights of Persons with Disabilities (CRPD). Although people with dementia are included in scope of disability in Article 1 of the Convention, we have not claimed this right so far.

ADI’s Chair, Mr Glenn Rees AM spoke in Singapore last year, and his speech, Dementia Friendly Communities: Global Initiatives And Future Directions at the 25TH Anniversary Celebration of Alzheimer’s Disease Association of Singapore last year, outlined clearly how the dementia friendly communities work needs to move forward, discussing two key objectives. The first was the objective of reducing stigma and understanding of dementia by greater awareness and meaningful engagement for persons with dementia of all ages…that is the lived experience approach.

The second point he made was about the practical expression of this movement, including human rights. He said; For the first time, policy makers and consumers are focusing on supporting and protecting the rights of a person with dementia in a similar way to what has been achieved in the disability field- for example in the charter of rights of people with dementia and their carers in Scotland and recent work to ensure that dementia is included in the Convention  on the Rights of Persons with Disabilities.

ADI have commissioned a human rights working party, with Alzheimer’s Scotland having been asked to take the lead, and including our Human Rights Advisor, Professor Peter Mittler. We hope this work progresses quickly, as it has become urgent that our human rights and disability rights are recognised, and acted upon.

There will be a human rights session at the ADI conference in Budapest and on his way to Budapest Professor Mittler is representing us to make a submission on Independent Living from a dementia perspective at a UN General Day of Discussion in Geneva on April 19th.

The following is Peter’s update and suggestions for action we can take now on the Convention.


The 161 countries that have ratified the CRPD are required to submit regular reports to the UN CRPD Committee. Non-Governmental Organisations (NGOs) and Disabled Persons Organisations (DPOs) have the right to submit ‘parallel reports’ which are taken into consideration in the Committee’s Concluding Observations and Recommendations.

Organisations of and for people with dementia can already make use of this right. A few are preparing to do so.

DAI strongly recommends that all national and regional Alzheimer Societies use this opportunity to protect and promote the basic human rights of more than 47 million people with dementia globally.

The following countries will be studied by the CRPD Committee in 2016

April 2016: Bolivia, Chile, Lithuania, Portugal, Serbia, Thailand, Uganda.

August 2016: Colombia, Ethiopia, Guatemala, Italy, Moldova, United Arab Emirates, Uruguay

Countries still to be examined:

Albania, Algeria, Armenia, Bosnia and Herzegovina, Bulgaria, Canada, Cuba, Cyprus, Estonia, Greece, Haiti, Honduras, India, Iran, Jordan, Kuwait, Latvia, Luxembourg, Malta, Montenegro, Morocco, Myanmar, Nepal, Norway, Oman, Panama, Philippines, Poland, Russian Federation, Rwanda, Saudi Arabia, Senegal, Seychelles, Slovenia, South Africa, Sudan, The former Yugoslav Republic of Macedonia, Turkey, United Kingdom of Great Britain and Northern Ireland, Venezuela.

All relevant reports are on the website of the UN Office of the High Commissioner on Human Rights:    http://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspxOpen sessions can be watched on UN webcasts

An accessible Users Guide to the Convention is on http://www.equalityhumanrights.com/publication/united-nations-convention-rights-people-disabilities-equality-and-human-rights-commission-guidance.

Further information from Dementia Alliance International.

Reminder: The next DAI A Meeting of The Minds Webinar, Living with dementia: new perspectives, is with Dr Al Power, whom many of you have already registered for. Please register now if you haven’t already, as we already have a large number of registered attendees. You can register here…








Research Wrap: December 2015

Slide1Dementia Alliance International is closing the year with the December 2015 research wrap, written by Dr Shibley Rahman, an academic from the UK, and a DAI supporter and volunteer.

I hope DAI members and supporters find it interesting. Thank you for taking the time and putting in so much effort in writing it Shibley.

Can you have ‘too much’ behaviour?

A DAI “research roundup” on excessive religiosity

There seems to me something intrinsically blasphemous about writing a post about neuroscience and religion in the holy festive season? So please do forgive me.

I sometimes feel ashamed how little I questioned particular medical-isms of the neurology of dementia. These include a ‘hyperjocular’ state; when you’re a bit too jokey for someone else’s liking. And so it goes on: ‘hyperphagia’, ‘hypersexual’, ‘hyperoral’, etc. But I suppose they help to define the scope of syndromes – such as the Kluver-Bucy syndrome which can occur in dementia (key features being ‘hypersexual’ and ‘hyperoral’).

Referring to any behaviour in dementia by clinicians is mostly in the pejorative sense. I suppose therefore that referring to any excessive behaviour shows a wilful blindness to the lack of subjective level of agreement of what an acceptable behaviour is.

And then you go onto research these groups of people with a particular dementia diagnosis.

A major flaw in researching any diagnostic group of people with dementia is that you assume that the initial diagnosis is water-tight. This is far from true in many cases as has been demonstrated by post mortem pathological studies of series of people with an in vivo diagnosis of dementia (see Prof Seth Love’s seminal paper from 2005).

The diagnostic criteria are themselves a ‘sledgehammer’ approach. The dementias which are predominantly the temporal lobe variant of the frontotemporal dementia (the temporal lobe being the part of the brain near the brain) comprise, for example, semantic dementia and the primary progressive aphasias.

About these dementias, Dennis Chan and colleagues in Brain (2009) originally observed the following.

“The most prominent cognitive deficits were impairment of episodic memory and getting lost. Prosopagnosia* was a symptom in right temporal lobe atrophy patients. These patients also exhibited a variety of behavioural symptoms including social disinhibition, depression and aggressive behaviour. Nearly all behavioural disorders were more prevalent in the right temporal lobe atrophy patient group than the semantic dementia group. Symptoms particular to the right temporal lobe atrophy patient group included hyper-religiosity, visual hallucinations and cross-modal sensory experiences.”

But this paper didn’t really define the scope of the hyper-religiosity.

It is indeed a vague term.

What could it possibly mean? Praying to more than one God? Going to church 20 times a day? Buying 40 copies of the Holy Bible? Intense feelings pursuant to following a particular religion?

My own particular interest is in the behavioural variant of the frontotemporal dementia.

Here as Laura Hughes, Tim Rittman and colleagues correctly argue, the excessive behaviours have been interpreted as a failure of inhibition.

“Behavioural deficits are a common and challenging aspect of the behavioural variant of frontotemporal dementia (bvFTD). Disinhibition, impulsivity and socially inappropriate behaviour are core diagnostic features of this disorder, together with stereotypical or perseverative actions, hyperorality, loss of empathy, apathy, and executive dysfunction including cognitive inflexibility.”

Lessons can be learnt about hyperreligiosity from other disease processes affecting the temporal lobe other than dementia – epilepsy, for example. This year, Rocio Garcia-Santibanez and Harini Sarva published on “Isolated Hyperreligiosity in a Patient with Temporal Lobe Epilepsy.” But even here the emphasis in the discussion was on the mechanism of electrophysiology rather than the phenomenon of ‘hyperreligiosity’ itself, though the authors did offer some useful clues about what they felt were in scope.

“Hyperreligiosity may be an ictal, an interictal, or a postictal phenomenology. Ictal religiosity is a type of ecstatic seizure, such as feelings of joy or pleasure. Different examples of ictal religious experiences include intense emotions of God’s presence, hallucinations of God’s voice, clairvoyance, or even telepathy.”

But an answered question in the literature – conveniently ignored by all – is why excessive activity as evidenced by EEG might produce the same type of phenomenon of hyperreligiosity as a pathological process causing atrophy (decrease in volume) of the human brain?

Indeed, it’s almost as if the exact nature of the pathology is irrelevant too.

Two years ago, Kara O’Connell, Joanne Keaveney and Raymond Paul considered Geschwind syndrome (O’Donnell et al., 2013), which is relevant too to dementia (see emboldened sentence).

“Geschwind syndrome is an eponymous syndrome of interictal behaviour or personality disorder, which has been described in temporal lobe epilepsy.

It has also been described in frontotemporal dementia.

Clinical features of this syndrome include preoccupation with philosophical and religious concerns, anger, excessive emotionality, viscosity (noted especially in speech), circumstantiality, altered sexuality, and hypergraphia.”

But all of this preoccupation with identifying the ragbag of symptoms which cluster together make me wonder about the attitude of the medical profession towards dementia: whether medics get more of a kick out of diagnosing disease than promoting wellbeing of their patients.

The current state of affairs is described as follows:

“He is presently maintained on olanzapine, lithium, and valproic acid medications. The patient currently presents with long-standing hypergraphia, religious preoccupation, and hyposexuality. An example of these symptoms is the patient’s preoccupation with God, writing multiple pages daily stating, “God is good, God is good.””

But the most bizarre in this small series of papers I have seen was published in 5 November 2015. There, D. Erik Everhart, Eric M. Watson, Kelly Bickel and  Alexandra Stephenson  described, “Right Temporal Lobe Atrophy: A Case That Initially Presented as Excessive Piety”

Their description is as follows:

“His spouse also indicated that personality changes may have initiated years before. More specifically, the patient was moved to Pastor progressively smaller congregations over a period of 10 years, in part secondary to having interpersonal difficulty with managing a  church body as well as the noteworthy increase in piety.”

But the paper never defines what this ‘noteworthy increase in piety’ actually is.

And not one is it questioned – what is a reasonable level of piety?

I do wonder how research academics and practitioners expect to make such judgments without being questioned by other members of their communities.

Happy xmas!

* Prosopagnosia is difficulty in perceiving faces.


Chan, D., Anderson, V., Pijnenburg, Y., Whitwell, J., Barnes, J., Scahill, R., Stevens, J.M., Barkhof, F., Scheltens, P., Rossor, M.N., Fox, N.C. The clinical profile of right temporal lobe atrophy. Brain. 2009 May;132(Pt 5):1287-98. doi: 10.1093/brain/awp037. Epub 2009 Mar 18.

Everhart, D.E., Watson, E.M., Bickel, K.L., Stephenson, A.J. Right temporal lobe atrophy: acase that initially presented as excessive piety. Clin Neuropsychol. 2015 Nov 5:1-15. [Epub ahead of print].

Garcia-Santibanez, R., Sarva, H. Isolated hyperreligiosity in a patient with temporal lobe epilepsy, Case Reports in Neurological Medicine, Volume 2015, Article ID 235856, 3 pages.

Hughes, L.E., Rittman, T., Regenthal, R., Robbins, T.W., Rowe, J.B. Improving response inhibition systems in frontotemporal dementia with citalopram. Brain. 2015 Jul;138(Pt 7):1961-75. doi: 10.1093/brain/awv133. Epub 2015 May 21.

O’Connell, K., Keaveney, J., Paul, R. Case report: a novel study of comorbidity between schizoaffective disorder and Geschwind Syndrome, Case Reports in Psychiatry Volume 2013, Article ID 486064, 3 pages.


Author: Dr Shibley Rahman © 2015
Editor: Kate Swaffer

Wishing you all a happy and safe festive season


Screen Shot 2015-12-22 at 12.40.24 pm

The Board of Dementia Alliance International wishes our members and supporters a happy and safe festive season, and we very much look forward to seeing you online or in person somewhere in 2016.

It is the festive season for many, and we take this opportunity to wish you all a wonderful time with your families and friends, and hope you stay safe.

It is worth remembering, it is not always a joyous time for everyone, so be kind and gentle on yourselves, and with each other.

Living with dementia: new perspectives

Our blog today also follows the email we sent inviting you to attend the Webinar, A Meeting of The Minds – Living with dementia: new perspectives –  with Dr Al Power in January 2016.

You can register for it here…

Happy 2nd Birthday

Two weeks before the event with Dr Power, we will celebrate our 2nd birthday with an online global celebration, and you will receive an Zoom meeting link early in the New Year.

Keep the date free: Wednesday January 13 / Thursday January 14, 2016 (USA/AU)

It will be a fun and exciting time, and we have much to celebrate. Perhaps the best thing to celebrate is the fact we are growing from strength to strength, with membership, and a louder global voice.

There were (perhaps still are) many doubters that people with dementia could set up and run their own group, including providing FREE membership and FREE services top others with dementia, all done with very little funding. Be proud . We certainly are.

Wear a hat, make a cake, do what ever you feel will make it fun for you.

If you live in the same town or area as other members, get together on the day, and join in as a group. Join forces with other DAI members in person. Have fun, and keep making a difference to not only you down life, but to the lives of others.

Our new Board of Directors

We will introduce our new Board of Directors early in the new year, and look forward to a very exciting year for people with dementia globally as we move towards a world where there really is “Nothing about us, without us.”

Please note:

There will be no Board meeting or Members Open meeting in January 2016, but instead a shared  celebration and an opportunity to meet the new Board members. All formal meetings like this will resume in February.

Best wishes from the 2015 outgoing and 2016 incoming Board members of Dementia Alliance International.

Chair and Editor: Kate Swaffer

“My Experience” by Wendy Sanchez

Screen Shot 2015-12-13 at 6.18.18 pmIt is delightful to be able to share our members stories with you, and this week, we have a lady from Mexico who has written a beautiful story of her experience with both dementia, life and becoming a member of Dementia Alliance International.

Our sincere thanks to you Wendy, for allowing us to share your life with our readers here.

DAI: “My Experience”

Written by DAI member, Wendy Sanchez, November 22, 2015

Three years ago, at age 68, I was in a deep depression.  I’d lost – in rapid succession – my home, my job, my driver’s license, my dreams.  I reached deep inside myself for an old dream; that of walking the Camino de Santiago across the entire country of Spain.  It was that or give up.

I completed that pilgrimage, wrote and published a book shortly thereafter, and then took a nosedive, mentally and physically.  My decline and the sudden arrival of dementia symptoms in my life were alarming.  Well meaning friends and family denied the obvious.  I was completely confused until I read the book “Still Alice”.

It was right out of my journal; and I quickly sought diagnosis, going first to my psychiatrist who had treated me for years for depression and a history of chemical dependence.  She also had my test results from the past few years which indicated a consistent decline.  When I told her of my recent experiences with “Alice”- like FTL symptoms, she agreed with my observations – with tears in her eyes – and started me on Aricept that very day.

We had previously discussed that I presented with multiple markers for developing dementia:  heredity, history of drug and alcohol abuse, decades of treatment for clinical depression, frontal lobe trauma from car accidents and spousal abuse, and YEARS of acute sleep apnea undiagnosed and untreated.

I’d almost expected the diagnosis, yet the shock was enormous nevertheless.

I had no transportation to get back and forth to doctors for much testing and I wasn’t in need of numbers to validate what I’d felt for years.  One psychologist visit and one brain scan were enough to document “mild to moderate cognitive decline”.

As many of us report, it initially felt like a death sentence to me; a dose of cruel reality that screamed “no hope” like a neon lamp.  Being single and not of independent means, I began to outline my suicide plans, like many before me had.  As an RN for decades, I knew there would come the inevitable ‘point of no return’ that heralded the end of my independence.

So the months since my diagnosis in March 2015 have rolled onward.  I returned to

Rural Mexico where I’d been living for 1.5 years with the intention to “take a lover and go snorkeling”. Hardly a wise plan because I was falling frequently, suffering anxiety attacks, challenged with word finding, speaking, understanding, and most executive functions.  I was also getting lost or disoriented, couldn’t find any information about what was happening to me, and scared to death.

At that point, I vaguely remembered a reference in “Still Alice” about DAI and  ? (the other organization).  I found their websites, clicked on members’ writings, found a trail of personalized information, and began to follow the leads:  first to make contact with an individual (Morris) who lived close by in Northern California.  He’d been a published sociologist and professor prior to diagnosis and guided me toward publications and writings by others’ as well, one of whom I have later come to know on line (Jeanne).  Someone else (Jay) contacted me on Morris’ suggestion just as I was searching for a support group.

I felt like Dora the Explorer on a journey of Hope.

Quickly I realized there were tools with which I could design a rehab program for myself.  Once I began to follow it, positive results soon followed.  Although incredulous, I actively follow that structure now.  The “perfect” days that fall with grace from the sky are seductive in that I think the doctors made a mistake.  As many of my peers confirm, the overall experience we share is often one of a roller coaster.

Finding DAI has made a huge difference in my life:  I have been invited into and participate in a weekly support group online, co-ordinated by Mick, who skillfully

Facilitates meetings globally.  The dedication and commitment of Mick, Kate and others in DAI make advocacy for international dementia rights a tangible vision.

It’s been an inspiration for me to see peers continue to “fight the good fight”, regardless of the toll it takes on their energy reserves.  My own personal journey is detailed in a Blog I began in order to advocate and educate friends, family, acquaintances (and their contacts) about the face of dementia; to dispel myths and fears about diagnosis and treatment; to describe our challenges and suggest helpful methods of communication. Being encouraged to continue writing by DAI members and blog readers reinforces that I can still write and hopefully serve others via that medium.

And, in that process, my words to friends and family have morphed from defensive – explaining what’s “wrong” with me – to creative advocacy as I remember that I am still a powerful writer with a voice to be heard.

The Blog in and of itself has been my own personal therapy yet it has impacted quite a few folks already.  I only need to review a few months to see that Hope lives, that Life continues, and – most of all – that I am NOT alone in this.

DAI brought humor back into my life at a time when I was sure it had abandoned me.  What can be more soul healing than shared laughter?

Author: A grateful member of DAI, Wendy Sanchez, Yelapa, Jalisco, Mexico
Copyright: Wendy Sanchez, 2015
Editor: Kate Swaffer