Category Archives: Diagnosis

Pauls story

We are delighted to be able to share the story of one of our newer Canadian DAI members, Paul Lea. Thank you Paul, for being a wonderful new friend to those of in the support group you have joined, and for joining the Action Group to help us with our work for all members.

The tragedy of Pauls story, is that even in the 21st Century, in spite of all the advances in diagnostics and research, people are being discounted when they present to health care professionals with symptoms of dementia! His snippet on revenge near the end of his story, will for many, be very amusing.

Paul writes:

“I’ve always been a fairly healthy person both physically and mentally but in 2005 I started noticing things were sort of unusual. Let me clarify that I started forgetting where I put things like my keys etc., sort of brushed this off and went on with my life.

I worked for a major clothing manufacturer where I was a quality auditor. I started noticing that I was having some difficulties performing my job. My responsibilities were to check the quality and the sizes of the jeans or shirts or jackets. I started having difficulties once I did the measurements of putting them back into the plastic wrappings. I was getting angry at myself because I didn’t understand what was going on and I knew sooner or later that my supervisor would question why I was having my coworkers, fold and put back into the plastic wrapping. I started noticing that at the top of my eyes were like fractured vision or like a kaleidoscope; I could still see and do everything else so it was just a nuisance.

As days and weeks went on I noticed other things like difficulty reading. I saw my family Dr. and told him about what was going on and he made a note in my file. In the spring of 06 while I was working my right leg went kind of like rubbery and there was a feeling of pins and needles and I could not walk. Now I have sciatica on the right side so I figured it was acting up again and also brushed it off and continued working. I should mention that I was getting headaches not severe but still enough that I have to take aspirins now this is unusual because I rarely had headaches so once again I saw my family Dr. and explained what was going on and he made some more notes in my file.

Fast-forward to the end of 07 and I thought I had an idea what is wrong with me. I had seen on the TV a commercial about a man going to the store and buying a lemon and then going to put the lemon in the fridge and see that all that is in the fridge is lemons. The theme of the commercial was Dementia.

So I looked up Dementia on the computer and mentally went over all of my symptoms and what they said were signs and I decided that I had Dementia. I went to my doctor and explained to him my findings and asked if I could get an x-ray for my neck because I thought maybe I had a pinched nerve because my right arm also went numb and limp. At this point I found myself arguing with my family Dr. who I have known for 30 years and thought of him as a friend. After about 20 min. he finally gave in and set up an appointment to get an x-ray of my neck.

When the results came back negative I asked him why did my leg and my arm go limp. So I asked him, do I have Dementia? He looked at me and laughed and said no I do not have a Dementia and that I am a hypochondriac and stop smoking. I left his office a little confused but once again I brushed it off.

Now this was the first week of December 2008. I drove my wife and daughter to the airport because they were going to Jamaica, on the way I got confused on which exit I should take. This was a little disconcerting because I take this route every day to go to my work. Aft I finally got them to the airport and brushed it off.

A week later I picked them up at the airport and drove them home but once again I found myself being confused as there was construction and I could not figure out how to get around tit to get them home There was a line of angry sounding their horns., so I closed my eyes hit the accelerator and went through a stop sign and got them home.

After Christmas I’m at the bank and all of a sudden I get this sharp very sharp pain behind my left eye kind of like a brain freeze when you had something very cold but this is different because I also lost vision in my left eye. I finished my business and walked to my car but then, I again lost vision my left eye. I chuckled thinking what is be next and I didn’t have to wait long because I as I was walking towards my car but I ended up walking into the car behind mine .

I’m driving home and I am noticing that I keep veering to the left ,I decided that I must need glasses and went to an optometrist. During my examination he asked me a number of questions and he picked up on something and excused himself and asked the receptionist to call the hospital and tell them that I need to be seen as soon as possible as he thinks that I’m having a TIA

So now things seem to be pretty interesting I am a hypochondriac I have lost peripheral in my left eye I keep veering to the left when I’m driving I do not have Dementia and now I’m told that I have or having a TIA in other words a stroke, I thanked the optometrist and went home.

December 26 I’m watching TV and I have the exact same sharp pain loss of vision symptom only this time I really felt strange so I called 911 and was transported to the hospital where I was put into a room and hooked up to a monitor. About a half-hour after that I went and had a CAT scan that I went and had an MRI.

I still did not know what was going on eventually, the doctor came out asked how I felt and I said I’m fine can I go home ?and he said no they are going to keep me overnight and I asked why not he said because I had a stroke.

When I think of someone having a stroke I think of someone who has some form of paralysis or having trouble walking or talking but I had none of these so I asked again can I go home? I told him that I felt fine and I just wanted to go home this time he looked at me and shook his head and said again no but this time, he said I had a massive stroke and I should be dead. I looked at him and saw that was serious and I said I guess I still mean I can’t go home.

I stayed a week in the hospital and he finally said yes I could go home.

My family Dr., yes the same one that called me a hypochondriac was retiring so I went to his party.¬†And I got my revenge, he handed me a camcorder and asked if I could film his retirement party and I said yes no problem. I’m looking at the camcorder and could not figure out how to operate it so I walked around pretended I was recording the celebrations.

June of 09 a psychiatrist gave me some tests and diagnosed me with Vascular Dementia

The rest is history.”

By Paul Lee © 2018
Dementia Alliance International

“But you don’t look like you have dementia”

In January DAI hosted a Master Class “But you don’t look like you have dementia” about what is feels like when people who have been medically diagnosed with this or that type of dementia are accused of not looking like they have it. Kate Swaffer, our current Chair and CEO, and¬†a co founder of DAI was maliciously accused of this late in 2016, to the point of feeling bullied by a reporter into disclosing decades of private, confidential and very personal medical to strangers and lawyers, and providing two highly confidential medical documents to the reporter. Once the reporter realised she was not a medical fraud, he still¬†wrote a defamatory story¬†which she responded to here…

Our¬†Master Class¬†‚ÄúBut you don’t look like you have dementia!‚ÄĚ, held in an attempt to expose how commonly this¬†occurs to most people ‘living well’ (at least publicly) with dementia, and how hurtful it is to people with dementia and their families. It also offers some advice on how to cope with it, and hopefully is¬†helpful to those living without dementia, especially those who persist in doing this.

These people are the ones who have sat in doctors rooms and been told they have a dementia of this or that type, or a¬†family member has it;¬†they are the people told to get their end of life affairs in order and get acquainted with aged care services (often now referred to as Prescribed Disengagement¬ģ[i]).

Their families have been sitting alongside them, trying to hold it all together, and pick up the many pieces falling around them.

This phrase is said all too often to people with dementia who are publicly appearing to live too well, whether they have become public advocates, or are simply living well in their local communities. We ¬†even have many stories of staff working¬†in advocacy organisations saying it, as well as many care partners who volunteer for these organisation’s.

One woman¬†from Australia, diagnosed for over ten years, but still living alone in her own home, and living beyond dementia, said in response to to Kate’s blog, of her own recent experience of being accused of not having dementia:

A ‚Äúclose friend‚ÄĚ challenged me recently when I explained that I just could not travel overseas, with the words ‚ÄúAnyway, you don‚Äôt have Alzheimer‚Äôs‚ÄĚ, and each time when I tried to respond, kept hammering at me, repeating ‚ÄúYou do not. You do not!‚ÄĚ Then with a voice of ultimate authority ‚ÄúAnyway, others agree with me!‚ÄĚ implying that friends we have in common see me to be a fake, a pretender, a liar, whatever.

I felt terribly assaulted, as though I‚Äôd been stabbed, again and again ‚Äď and by one of my closest friends?

I was in shock, asking myself -‚ÄúWhy would anyone ever do this to themselves. A life sentence! Losing so much of one‚Äôs quality of life ‚Äď one‚Äôs mind? All the books you can no longer read, and so much more, and still trying to be ‚Äúnormal‚ÄĚ. It was, and still is, just devastating to feel betrayed, by someone so close to you.‚ÄĚ

This habit, based on myths and preconceptions that everyone with dementia must look and act late stage for them to really have it, needs to stop, and in the worst cases, could be seen as a disability hate crime. There are too many people who have been medically diagnosed with dementia now in the public eye, either as speakers, authors, advocates or bloggers and who may not look like they have dementia, but in reality, not all the doctors around the world can be wrong. It is offensive, to the person diagnosed, to their families, and to their medical doctors, and quite simply, it has to stop.

It is harmful, hurtful, and wrong for anyone without dementia to accuse someone living with a chronic progressive terminal illness, that when diagnosed in the earlier stages of the disease, has mostly invisible disabilities.

In reality, as many people with dementia are now being diagnosed much earlier in the stages of the disease or condition causing their dementia, and¬†although still being provided with late stage dementia management, they can and do often live well for many more years than was previously thought possible. And unlike something like Downs Syndrome, there is not a particular ‘look’ to dementia.

You can watch the recording of our webinar here… Please listen, and learn.

[i] http://journals.sagepub.com/doi/abs/10.1177/1471301214548136?ssource=mfr&rss=1; http://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription/

“Why do you not believe me?”

By Mary Beth Wighton, Person diagnosed with dementia, Chair of the Ontario Dementia Advisory Group and member of Dementia Alliance International. First published: July 2nd 2015. Thank you Mary Beth forgiving us permission to share your experience here.

When I say I have dementia, there is usually a stigmatized response: “Gee you don’t look sick.” “You are too young to have dementia.” “I’m not good at math either.” “Everyone gets forgetful.”

What I find surprising is that some of these stigmatized responses come from people who know me, have direct contact with me and are recipients of my advocacy work. It is as if they don’t believe I have a disease that has no cure and ultimately will die from. One such person said that I “…can walk and talk so I’m fine.”

What else do I need to do in order for all people to believe me?

Perhaps the better question is why do I feel the need to convince them? And why am I disappointed, hurt and sometimes angry with them that they don’t?

Rest assured I have received a diagnosis of probable Frontemporal dementia. I have been through the gamete in seeing doctors, tests, and been under high-scrutiny. My brain has been picked and prodded at. I’m so sick of it, that I have told Dawn I’m done with doctors and don’t want to see and more. I will do the basic requirements necessary for me to retain my personal insurance. That most likely means a yearly visit to the world renowned brain hospital Baycrest to see the Head, Division of Neurology, Dr. Morris Freedman.

I’m reminded of the apostle “Doubting Thomas” who refused to believe that the resurrected Jesus had appeared to the other apostles until he could see and feel the wounds of Jesus.

Skeptic, why do you not believe I have dementia?

I am unable to show you my diseased neurons that are not firing on all cylinders. I am not alone in this as most people having dementia experience this stigma. I am fortunate in that I have an early diagnosis. This has enabled me to have the time and ability to learn about my diagnosis and prepare accordingly.

Dementia does not mean: I am old and always forgetful.

Skeptic, I:

‚ÄĘ am a person

‚ÄĘ have a diagnosis of dementia

‚ÄĘ have great long-term memory

‚ÄĘ struggle with short-term memory

‚ÄĘ struggle with making decisions

‚ÄĘ struggle with math

‚ÄĘ struggle with understanding humour

‚ÄĘ struggle with understanding complex movies

‚ÄĘ struggle with word finding

‚ÄĘ am not as compassionate to others as I once was,

‚ÄĘ take a great deal of medication that makes me tired (not lazy), and

‚ÄĘ I am loved by many.

Reader, take the time to understand dementia. It doesn’t take long. Educate yourself. ¬†I would hate to think that you too are a skeptic.

Our Christmas wishes…

Firstly, we wish everyone a safe and peaceful festive season, and thank everyone for their support and input to DAI. It has been a very busy and productive year, and we are grateful to our members, our supporters, our sponsors and especially to anyone who has made a personal donation to help us continue with out work.

Rather than ending the year here with a wrap of our activities, which we will do when we publish our first Annual Report either before the end of December 2016, or early in January 2017, instead we are posting two very important Christmas wishes…

phyllis-fehrThe first request or wish was written by one of our new board members, also the Vice Chair of the Ontario Dementia Advisory Group, Phyllis Fehr.

“To the nurse who may care for me:

Hi, I am your assignment for today. I know I am just one of many but I ask you to please take the time to know me. You see I once was also a nurse. That really doesn’t matter as I am a human being. I come with an education and feelings. I am also a wife, a mother, a grandmother and more. Please take the time to read my chart as you can gain much knowledge about me before you ever meet me. In it you will find my medical history; this may give you a glimpse of what to expect from me. It will tell you what is being treated now.

Know full well that, that may not be my only problem.

What you see when you walk through that door may not be very telling. As you would see a patient that looks well and capable, able to do things on her own. If you don’t take the time you will not know that I have a cognitive impairment. You may not know that what ever you tell me is lost the minute you walk out of the room.

Don’t ridicule me for writing things down; you see I do this, so I will remember which will make your job easier in the long run. You see if you took the time to know me you would understand this, you would have not asked me if I was a baby who can’t remember anything. You would not embarrass me in front of others.

You see I know I have a problem, I am just trying my best to live well with what I have. If I can make notes then I can explain to my family what is happening, rather than them having to interrupt your already busy day to find out what is happening. I want to help you but in order for this to happen you must understand me. Well not just me all patients that you care for. You see stress makes my cognitive impairment worse, so yes you may have your hands full but I don’t mean to be a problem.

You see what is happening is that I am having a problem that I may not be able to comprehend or express but if you are aware you will be able to help me through this. You see I have early onset Alzhiemers, it started in my late 40’s.

No, I don’t look like a typical Alzheimer’s patient.

So it is hard to see it, but look, look there in my chart, oh there it is. If you aren’t well informed on the disease ask your educator. You could also go on line or you could become a dementia friend, they have lots of educational material on the dementia friends web site.

If I cause you any problems I do apologize. I do not mean to be a problem but this is what I live with. This is what many people with cognitive impairment live with, no matter what the cause of the impairment.”

Phyllis Fehr Copyright 2016

All people with dementia, and all members of Dementia Alliance International (DAI), have one other important Christmas wish:

“If you don’t believe we have dementia, please contact us in person, and make the time to find out about our the reality, before you accuse us of not having dementia behind our backs.

If it is really necessary in order¬†to still believe us, because ‘we don’t look or act like we have dementia’, most of us would¬†invite you to come with us to our next doctors appointment.”

Dementia Alliance International Copyright 2016

Myrna’s story: Excelling for as long as possible

Myrna Norman
Myrna Norman

We are delighted to share another story from one of our members about what is is like living with a diagnosis of dementia. Although World Alzheimer’s Month 2016 #WAM2016 is more than half way over, we have many more to share with you as the month progresses.

Thank you Myrna.

Ps. Next week, on World Alzheimer’s Day 2016, we also announce the winner of the Inaugural Richard Taylor Memorial Advocates award; it continues to be a busy and exciting month!

This is Myrna’s story…

“When the GP informed me of my FTD diagnosis, shock was my first emotion.¬† Despair, disbelief, and downright disengagement ¬†followed until my decision to educate my self, reach out to those who could mentor me and get a grip, literally.

Losses included the inability to competently do my company’s books, getting lost when driving, making decisions without forethought, and real spacial difficulties.

But hold on to your hat, some gains have also impacted my life.

My decision and my drive to direct my energies to participating in anything and everything to educate, to empathize, to empower those touched be dementia, seemed to take a life of its’ own.  To offer my personal experience to anyone who may listen enabled me to join DAI, Alz Society, Purple Angels, while spreading the good word.

Having an ability to submit to WHO a simple sentence cheered my soul.  The inclusion into online support groups, speaking to Richard Taylor and others working so hard on our behalf, are just some highlights.

Now an Alzheimers diagnosis as well to cope with or to excel with.  I choose to excel as long as possible.  Speaking to Care Aids at their graduations, taking part in forums and local fairs allows me to meet my drive to educate.

Of course, I have many days that getting dressed is an effort that I cannot meet, staying awake for full days seems impossible but always the folks in my life encourage me, understand me, and give me the space and the understanding to Do It My Way.”

With love
Myrna Norman

Psychologist Denise Craig presents “The Dementia Enablement Guide”

Last week we had the privilege and pleasure of a supporter of DAI, and friend of our members, senior psychologist Denise Craig from Cairns in Queensland. To introduce the presentation, Denise said:

When my mother was diagnosed with Alzheimer‚Äôs and Vascular dementia at the age of 65, dementia became my working life‚Äôs vocation. I was fortunate enough to achieve a position where I could assist people diagnosed with dementia, and those providing care and support, both through face to face assistance and also ‚Äėbigger picture‚Äô systemic strategies.

In 2012 as a private undertaking I established a Facebook page. Via posts and private messages I have had the opportunity to hear from many people with rich and diverse stories to tell. Through social media I noticed a pattern of criticism of health professionals, namely that there is little help after diagnosis.

People diagnosed with dementia, care partners, family & friends, can find it hard to come to terms with a dementia diagnosis. Bearing in mind that no two people will have identical experiences, generally speaking dementia is an illness for which support is imperative.

Support includes both early intervention & ongoing assistance to adjust to changes, develop coping strategies, maintain maximal independence & improve quality of life. Holistic assistance which encourages people to live to their personal potential is the cornerstone of good care. By adopting an enabling approach focused on preferred occupation & meaningful activity, independence & well-being, people diagnosed with dementia & their significant others have an opportunity to live to their post-diagnosis potential.

Twelve months ago whilst meeting Kate Swaffer in Melbourne, we shared a robust conversation about rehabilitative/enablement opportunities. I committed to the construction of a ‚ÄėDementia Enablement Guide‚Äô to assist GPs to discuss options which consumers might find helpful.

Through my role within the Qld Statewide Dementia Clinical Network I established a multidisciplinary group which completed this project. A group of people living with dementia, care partners, clinicians and academics reviewed the document and provided valuable feedback. The tool is being trialled in Cairns and Kiama, NSW (as a part of their DFC project), and a consumer version is nearing completion.

The Dementia Enablement Guide is freely available via Qld Health’s website at https://www.health.qld.gov.au/cairns_hinterland/docs/gp-dementia-enablement-guide.pdf

You can also download Denise’s power point slides here Denise Craig presents The Dementia Enablement Guide to DAI

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‚Äôs presence, hallucinations of God‚Äôs 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‚ÄôConnell, 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‚Äôs preoccupation with God, writing¬†multiple pages daily stating, ‚ÄúGod is good, God is good.‚ÄĚ‚ÄĚ

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.

References

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

Support: of, by and for people with dementia #DAM2015 Day 29

DAI-nothing-without-us

 

 

Very slowly, the world is coming to grips with the fact that many people with dementia can still live good lives.¬†Yes, lives that are productive and where a contribution to society can still be made. It is Day 29 of World Alzheimer’s Month #WAM2015, and our membership os growing. As such, we need to accommodate new members needs.

Dementia Alliance International¬†(DAI) is an organisation where we are living, and hopefully teaching this reality, and our members are encouraged to speak up for themselves, and to contribute as best they can, in any way they wish, and in spite of the varying¬†and changing disabilities imposed on all of us by a dementia. DAI has only been operating since 1 January 2014, but¬†we now the peak body for people with dementia, through collaboration with Alzheimer’s Disease International.

Indeed, we are also bringing to reality, the “nothing about us, without us” slogan.

DAI Membership is growing

Membership of people with dementia in Dementia Alliance International is growing, and therefore, the services and support groups we currently provide have needed to grow two match our increasing membership numbers. Of course, this may mean, sometimes what we have to offer, unfortunately may clash with another organisations services.

Life is like that, but if we are to properly serve our members, we have to hold things at times suitable to them, not us. Naturally, some things we plan may not always suit everyone. It is also why some of us get up for meeting at 5am, or stay up for late meetings at midnight.

DAI is not in business, nor in competition with anyone else. It is, quite simply, an advocacy and support group, of by and for people with dementia. And as our membership continues to grow, we could end up with support group meetings in the same country or region, all being held at the same time, if that is when members want them.

This is especially likely as  the rate of diagnosis is going up at one new diagnosis every 3.2 seconds, and as we have placed a limit on numbers attending support groups at a maximum of 12 people.

DAI is unique

Our uniqueness is that all of our services and support are provided by people with dementia, for people with dementia, whereas other organisations are owned and run by people without dementia. This can be a weakness for us, but it is also one of our strengths.

DAI was set up, in part, because the organisation knows as DASNI, which was originally for people with dementia, was taken over by people with out dementia, and it now offers little for people with dementia, and in fact 2/3 of membership are family care partners.  This is ultimately, the main reason DAI was set up. People with dementia want to run their own race, and DAI did not spring from DASNI, but rather, because they were not necessarily serving what a group of us including the late Richard Taylor, felt were the real needs of people with dementia. We wanted autonomy.

There are many organisations, professionals and interested people, who do not have a diagnosis of dementia, who also run groups and services for us, and for this we are obviously grateful. We cannot do it all, but conversely, nor can they. The advocacy organisations around the world say they have services for people with dementia, but still, most of them are for family care partners and not specifically for us.

People with dementia have felt for a long time that they need their own groups and organisation, and more importantly, need to feel our needs are being met. As we grow in membership, we are simply providing an organisation, that has services including support groups, for our members.

Our point of difference will always be, is that Dementia Alliance International is an advocacy and support group, of, by and for people with dementia, the one thing no other organisation is offering.

In global campaigns¬†to promote dementia friendly communities, having organisations supporting us to ‘do for ourselves’ seems the logical next step, and is also dementia friendly. We may have disabilities, but we will be able to¬†manage our lives independently for longer with support for them, in the same way any other person with any other disability is supported to do so.

DAI support groups

Mick Carmody from Brisbane in Australia is working tirelessly to host and promote support groups for people with dementia all around the world, and he already running them at 5.30 in the morning, and very soon, 6pm at night. Please join him if you would like to be part of a fun group for people with dementia, or support him in his work. Our groups are about supporting each other, about helping newly diagnosed people see their lives are not over, and that they are not alone. They are social as well as support groups, that take place in the privacy of your own home, helping to reduce stigma and isolation. Mick would love to host or set up one for you.

DAI promotes there is life behind a diagnosis of dementia for everyone, and provides a forum for sharing that is like no other in the dementia care sector, or at least that we know of.

Finally, if you from a non English speaking country;

DAI is able to provide the platform for you to run support groups in your own countries, in your own languages. All you need are people with dementia to become members of our organisation.

Oh, and membership, and our services including the support groups, are free.

Copyright: Dementia Alliance International 2015
Editor: Kate Swaffer

The Myths of dementia (2014), by the late Dr Richard Taylor

In honour of the late Dr Richard Taylor, we are posting another of the webinars he hosted for DAI last year, as part of our Master Class series during World Alzheimer’s Month. It is already Day 23 of #WAM2015, and the myths of dementia are still very much there, and our awareness campaigns are still not getting the message through well enough. We do¬†hope this webinar helps to change that.

Master Class 2: My Conversation with My Doctor

For Dementia Awareness Month 2015, #DAM2015 Day 8, we are re-posting a Master Class from 2014. It is an important conversation about talking to your doctor when you are diagnosed, hosted and facilitated by DAI members, two of who were medical doctors, Dr Jennifer Bute from the UK and Dr Dave Kramer from the USA, when they themselves were diagnosed with dementia.

First published on Sep 11, 2014 on our YouTube Channel.

In this webinar, our panel shared their experiences of sitting on both sides of the table ‚Äď physician and patient — and talked about how to make the most of your visit to your doctor, how to get the information you need, how to understand what the physician is telling you, and how to advocate for yourself.

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