Category Archives: Diagnosis

“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:

• am a person

• have a diagnosis of dementia

• have great long-term memory

• struggle with short-term memory

• struggle with making decisions

• struggle with math

• struggle with understanding humour

• struggle with understanding complex movies

• struggle with word finding

• am not as compassionate to others as I once was,

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

• 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’s and Vascular dementia at the age of 65, dementia became my working life’s 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 ‘bigger picture’ 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 ‘Dementia Enablement Guide’ 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.

https://youtu.be/JmVP6vpNHwM

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’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.

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.

https://youtu.be/dUNjCCFxf0A

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.

https://www.youtube.com/watch?v=jRUE3900OXs

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 – 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.

MEDICAL DISCLAIMER: Information and other content included on this Site or in this video (Master Class 2: My Conversation with My Doctor) is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a professional health care provider. This site and video does not provide medical advice. You may not use or rely on any information contained on the Site or in the Video for diagnosing a health or medical problem or disease. You should always consult a professional health care provider regarding any health or medical condition, prevention, or treatment. Do not delay or disregard seeking professional medical advice on account of something you have read on www.dementiaallianceinternational.org or viewed or heard in a video on this Dementia Alliance International YouTube channel.

World Alzheimer’s Report

Media release from Alzheimer’s Disease International:

GLOBAL COST OF DEMENTIA SET TO REACH US $1 TRILLION BY 2018

World Alzheimer Report 2015 estimates that someone in the world develops dementia every 3 seconds.

London, 25 August 2015: The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends’, released today, has found that there are currently around 46.8 million people living with dementia around the world, with numbers projected to nearly double every 20 years, increasing to 74.7 million by 2030 and 131.5 million by 2050.

There are over 9.9 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds.

The report shows that the current annual societal and economic cost of dementia is US $818 billion, and it is expected to become a trillion dollar disease in just three years’ time. The findings show that the cost of dementia has increased by 35% since the 2010 World Alzheimer Report estimate of US $604 billion. This means that if global dementia care were a country, it would be the 18th largest economy in the world, and would exceed the market values of companies such as Apple (US $742 billion) and Google (US $368 billion)*.

The report updates Alzheimer’s Disease International’s (ADI) data on dementia’s global prevalence, incidence and cost, highlighting dementia’s increasing impact on low and middle income countries (LMICs). It is estimated that 58% of all people living with dementia today reside in LMICs, a proportion that is anticipated to rise to 68% by 2050, driven mainly by population growth and an ageing global population. It is also expected that by 2050, nearly half of all people with dementia globally will live in Asia.

The updated estimates are based on new research led by Professor Martin Prince from King’s College London’s Global Observatory for Ageing and Dementia Care**. These new findings take into account both the growing numbers of older people (population ageing), and new and better evidence on the number of people living with dementia, and costs incurred.

Professor Martin Prince notes: “We now believe that we underestimated the current and future scale of the epidemic by 12-13% in the 2009 World Alzheimer Report, with costs growing more rapidly than the numbers of people affected.”

In light of the findings, the report calls for a specific global work stream from all stakeholders focused on assisting LMICs to develop programmes to raise awareness and improve access to early diagnosis and care. ADI is urging policy makers around the world to approach the issue with a broader agenda and a wider representation of countries and regions, particularly those in the G20 group of nations. A key recommendation of the report calls for a significant upscaling of research investment into care, treatment, prevention and cure.

Marc Wortmann, Executive Director of ADI, commented: “The rising global cost of dementia will pose serious challenges to health and social care systems all around the world. These findings demonstrate the urgent need for governments to implement policies and legislation to provide a better quality of life for people living with dementia, both now and in the future.”

Glenn Rees, Chair of ADI, outlines ADI’s urgent priorities: “We must use the findings of this report to advocate for action in international forums to fight back against the stigma of dementia and encourage the growth of dementia-friendly communities and countries. This action should include timely diagnosis and post-diagnostic support and improved access to support and care, especially in low and middle income countries.”

Professor Graham Stokes, Global Director of Dementia Care at Bupa, supporters of the report, added: “The findings also highlight that the workplace is a unique place to tackle dementia. With almost half of the world’s population in employment*** and people staying in work for longer than ever before, employers have a responsibility to act as they have the potential to make a huge difference. They can support people living with dementia and their carers, and also encourage healthy lifestyle changes which may reduce the risk of dementia.”

You can download the SUMMARY and the FULL REPORT here:

World Alzheimer Report 2015 Summary 2015

World Alzheimer Report 2015

“Nothing about us, without us”

DAI nothing without #35CDB0

Day 5 Dementia Awareness Week UK 2015

Vorstand  HR 1 (2)Although there are seven days in a week,  this will be our final blog for this event. As editor, I have tried to highlight some of the DAI and other presentations from ADI2015, as well as some of the issues we face.

The catch phrase, nothing about us without us, has almost become a tick box for organisations, in the same way person centred care is written up in documentation, but rarely delivered. Far too often, they may include one of us, or use the excuse that they tried to get people with dementia involved, but it is to difficult to find anyone with dementia willing to stand up and speak out or be involved.

The road of advocacy and self advocacy is a really tough one, as often, to have become an advocate, you must be part of a marginalised group, and often one that is being discriminated against, or you have to speak out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing they are not doing things well in someone else’s opinion, or perhaps the change you want, does not fir their own agenda or business plan.

There seems little point continuing to discuss many things with some people, as being seen as militant or too direct and forceful is not always helpful. However, if an organisation does not like what the advocates who speak up about, either things like their basic rights, or for change they feel could improve the care of a certain group, or positively impact an issue, then, surely, there might be a need to at least look in the mirror, and be open to full and transparent discussions. I continue to speak out for full and proper inclusion of people with dementia, at every level in every conversation about them.

Unfortunately, many of the advocacy organisations in the dementia sector are not willing to accept their consumer voices as motivators for change, even when, for years, we have been telling them the services provided are not working for us, or there are, in fact, not enough services for us or not the services we want. What is the point of being a consumer advocate, if no-one bothers to listen, or more importantly, accept the criticisms and use to as positive fuel to consider change. I’ve been part of many organisations, either employed or as a volunteer, and it is the ones who are able to accept critique well, that have the greatest impact on the lives of real people.

As the life of Dementia Alliance International (DAI) continues, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems to be the most productive way to be an advocate. On the way, DAI is providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well.

Alzheimer’s Disease International is really listening to us now, and through collaboration with them, in the process, DAI has become the peak body for people with dementia in the world.

It is thrilling to be able to report here that we have been contacted by the Alzheimer’s Society UK to discuss collaborating with them and work together in some way, and I am very much looking forward to meeting with their CEO, Jeremy Hughes, in June this year.

We now all need our own local, state and country advocacy organisations to come on board, and to really listen to us… and do the same. We are not a threat, we merely want to work together.

Working together, we will improve the lives of people with dementia and our families.

It is not acceptable to continue to do anything, about us, without us.

Editor: Kate Swaffer

Copyright: Dementia Alliance International 2015

Ps. I have written on some mildly contentious topics on my own blog this week, including Who am I?, Whose story is it?, Pain vs Suffering, Behaviour Management or Staff Education and Advocacy and activism for people with dementia.