Tag Archives: Dementia Alliance International

Getting in the mood for WRAD2019!

This video is of DAI member, Graeme Atkins from Australia, who wrote and performed this song especially for our 5th birthday this year.  Very special thanks to Graeme, and also to his wife who supports him to live so positvely with dementia.

We are posting it here today, to get us in the mood for our World Rocks Against Dementia online event, being held on March 22/23, 2019.  Register here now, if you haven’t already done so!

Happy 5th Birthday to DAI

DAI at the Global Disability Summit in London

Howard Gordon and Professor Peter Mittler relaxing at the Global Disability Summit 2018

Along with Professor Peter Mittler, Howard Gordon attended the recent Global Disability Summit in London, representing Kate Swaffer and DAI at the Civil Society Forum and Global Disability Summit in London on 23rd  – 24thJuly 2018.

Whilst they DAI members wear many hats and advocate at many levels locally, nationally and internationally, Howard and Peter were attending the Summit as members of DAI. Amy Little from GADAA and the Alzheimer’s Society UK supported our members, also enabling DAI to have brochures and materials on the MarketStall she was hosting.

It was also pleasing to note that Nigel Hullah from the 3 Nations Dementia Working Group was also in attendance. Working collaboratively and together, we are so much stronger, especially wheh trying to represent 50 million people.

We have had a lot of activity since this Summit was held, which happened in Chicago, so the number of blogs in our draft folder is rapidly growing, and as we don’t want to overload you, we will only post weekly at this point.

For World Alzheimer’s Month, we intend to have a daily blog, so keep your eyes on your inbox from the 1st of September.

Howard wrote this summary for us:

In June, I learned of the Civil Society Forum and the Global Disability Summit that was to be held in London, organised by the International Disability Alliance and the UK and Kenyan Governments.

On further investigation, neither days appeared involve anyone living with Dementia as a speaker or delegate and I contacted the International Disability Alliance for clarification. After numerous emails from myself, Kate Swaffer and others we finally secured three places as delegates for the two days, one for the Alzheimer’s Society and two for DAI but sadly even though I tried up to the day before, no speaker.

DAI shared a stand with GADAA, the Stride Project and The Alzheimer’s Society and during the intervals we were there talking to delegates and making connections with DAI and the Stride Project.

The objectives of the summit were:

  • Raise global attention and focus on a neglected area
  • Bring in new voices and approaches to broaden engagement
  • Mobilise new global and national commitments on disability and
  • Showcase best practice and evidence from across the world

During the two days there were many opportunities to talk about rights, post-diagnosis support, services, funding and inclusion and although there was no opportunity to speak, I had taken copies of one of the DAI statements prepared by Kate Swaffer and some were placed on the stand and others I handed out as I spoke to delegates, at least DAI’s message was communicated.

One of the videos shown at the Summit

The main opportunities that may come from the two days are:

New DAI members in three African countries.

An invitation for DAI to be involved in the work of the UK Department for International Development and.

A meeting with Sir Philip Alston who is undertaking a UN special investigation into poverty and disabilities in the UK.

The Charter for Change, is full of promise but the devil is in the detail and whether Governments and organisations follow through with their commitments.

If the reaction of a member of the House of Lords to being told I have Dementia during our conversation is anything to go by, I have my doubts.

You can find a shortened version of the charter here:

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/725336/Global-Disability-Summit-charter-easy-read2.pdf

The two days were different in that the forum was more about DPO’s and NGO’s whereas the Summit was not unexpectedly, more a political backslapping exercise.

DAI Statement

My name is Howard Gordon from Sheffield in the UK, I am a person living with COPD, Alzheimer’s and Frontotemporal Dementia, here today as a member of, and representing Dementia Alliance International, and our Chair and CEO, Kate Swaffer. DAI is an organisation that represents the 50 million people currently living with dementia. I am one of them.

The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.

Dementia Alliance International is the global voice of people with dementia, and Alzheimer’s Disease International is the global voice on dementia. Both are lead organisations of the Global Alzheimer’s & Dementia Action Alliance and the impact of dementia as a disability, and on women are two areas of our focus.

On the occasion of this Global Disability Summit, we ask that the you take notice that many national health systems exclude the collection of data on their citizens over age 60, others only report data to age 49, and less data is collected on women and girls than on men.

There is a need to disaggregate data by disability, sex and age to understand the state of women with disabilities, especially in LMIC’s and remote communities, and informing policies to ensure their effective inclusion and the full realization of their human rights.

Together, we urge continued attention to neurocognitive disorders in national data sets and refer the commission to the work of the Global Dementia Observatory project of the WHO which is developing a knowledge and practice exchange for Member States in support of the Global Dementia action plan as adopted by the WHO in May 2017 and the PAHO regional dementia action plan.

We also note that the disability due to many forms of dementia; especially Alzheimer’s disease often only diagnosed in later life, results in likely undercount of disability and access to rights redress.

Professor Peter Mittler stated in 2016; “Although people with dementia are indisputably included in the characterisation of disability in CRPD Article 1, governments are not including them in their implementation of the Convention. This could be considered as an example of systemic discrimination against millions of people.”

As a member of Dementia Alliance International representing the 50 million people currently living with dementia, and those being diagnosed every 3 seconds, of which the majority are living in lower and middle-income countries, we ask to be included; which also means support to be includes, both in terms of our cognitive and or other disabilities, and funding to enable attendance. Dementia ensures for the vast majority of people, an enforced form of poverty, due to the discrimination and stigma still experienced.

Dementia Alliance International would also like to remind delegates here today that people living with dementia have the same rights as persons with other disabilities, and we must move away from the medicalisation of dementia and instead view it through the lens of acquired disability.

Everyone with dementia is a rights bearer under the UN Convention on the Rights of Persons with Disabilities (CRPD). All State Parties to the CRPD are committed under international law to include persons with dementia in implementation of the convention.

Access to the CRPD is an essential right for all people living with dementia however there is limited evidence this right is being realised. Yet still many with dementia face abuses and violations of their basic rights. This can range from a lack of access to health services, to a culture of discrimination and even violence against those with the condition. People living with dementia everywhere must be supported to claim their rights as human beings with disabilities.

It is also imperative the impact on women and girls of dementia is considered.

Women are disproportionately affected by dementia. More women than men live with dementia, and women and girls provide the majority of unpaid care and face the greatest stigma.

Dementia is listed by the WHO as the fifth highest cause of death for women worldwide and is the leading cause of death and disability in older persons.

Women make up 2/3 of dementia care supporters and more than 70% in lower and middle-income countries. Unpaid women carers compared to male carers, are also more often unemployed due to their unpaid role; girls who are carers also miss out on education.

Everyone impacted by dementia receives little if any health care, including a lack of access to a diagnosis, nor appropriate support to live with dementia once diagnosed.

Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia).

The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way.  Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death.

Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no woman is left behind because of her dementia.

Gendered barriers to mobility and accessing justice lead to isolation and exclusion.

Understanding intersecting forms of gender- and disability-based violence, exploitation and abuse against women with disabilities including forced medical and psychiatric interventions.

Women with disabilities experience this type of abuse at disproportionately higher rates than others, and in unique forms owing to ingrained discrimination and stigmatization.

It is estimated that women with disabilities are 1.5 to 10 times more likely to be physically or sexually abused by a family member or caregiver than other women.

Women with disabilities are often excluded from national laws and policies and remain marginal to global discussions and agreements relevant to their empowerment. The global women’s agenda seldom takes into consideration the issues and concerns of women with disabilities.

In addition, women with disabilities are also neglected within the disability movement and the mainstream women’s movement. Stand-alone policies on women with disabilities remain limited; they are often excluded in policymaking and decision-making processes.

Finally, we ask governments, Member states, NGO’s, DPO’s and Civil Society to consider their responsibility to provide the financial support so often needed to enable people living with dementia to attend meetings and conferences on these and other matters affecting them, in line with

“Nothing about us, without us”,

We therefore ask we leave no one behind, including people with dementia.

The media need to refrain from promoting the perception that we are all suffer, I do not suffer now but I know I will suffer later in my journey, but I do not want to be referred to as a sufferer. If I had Cancer, the media would refer to me as a fighter, yet I am a fighter, I fight every day to live within the reducing limits of my Dementia. Just because I have a terminal disability, does not mean I should not be treated to equally with other persons in my community.

Dementia is no longer a silent disease, we have rights under the UN conventions and we no longer wish to be subjected to the philosophy of BPSD leading to Chemical Restraint, Sectioning and Involuntary Care.

I do not consider myself a sufferer, I am a fighter, fighting my co-morbidities and fighting for our rights

DAI also looks forward to the day when we no longer need to define people by disability, and we are all treated equally.

We therefore ask we leave no one behind through the full implementation of the CRPD, including people with dementia.

Thank you.

Howard Gordon.

Sources for the statement: 

The Dementia Alliance International, the World Health Organisanisation, the United Nations, the CRPD, the Global Alzheimer’s and Dementia Action Alliance, and the Alzheimer’s Society UK.

One day until the 71st World Health Assembly

The 71st session of the World Health Assembly officially opens on Monday 21 May. Although the official agenda does not begin until Monday, the action starts days before.

DAI is working more closely with the NCD Alliance and many other organisations, now also including the Worldwide Hospice Palliative Care Alliance (WHPCA), and we will be joining the NCD Alliance #ENOUGH Campaigns this week, and the many activites of the WHPCA. As dementia is a non communicable disease (NCD), and we have ahuman right to appropriate palliative care, these are important for us all.

Here are two of the #NCD Alliance campaign messages:

ENOUGH:  Time to translate commitments to action for NCDs. At #WHA71 we must put people 1st, make #NCDs an investment priority backed up with evidence-based policies, protect children from obesity and give all #PLWNCDs access to treatment #enoughNCDs #beatNCDs
Calling all leaders at #WHA71. We have had ENOUGH. We want and need you to commit to putting people first by involving #PLWNCDs in the decision making process. Our health is our right, and all people need action to protect it right now! #enoughNCDs #beatNCDs #NCDvoices

Below is a list of some of the meetings DAI is attending and the many interesting side-events throughout the week:

  • 20/5 – 10:30 amWalk the Talk: The Health for All Challenge – walk or run – led by WHO
  • 20/5 – 18:00 – 19:30 pm – Panel discussion on Saving Lives, Spending Less: A Strategic Response to Noncommunicable Diseases
  • 21/5 – 9:00 am – Opening of the World Health Assembly
  • 21/5 – 10:30 – 11 am – NCD Alliance meeting
  • 21/5 – 2:30 & 4:00 pm – Meetings with the WHO
  • 21/5 – 18:00 – 19:45 – NCD Alliance Side Event: ENOUGH. Making 2018 the year for action and accountability on NCDs
  • 22/5 – 17.00-19.00 – Global Rehabilitation Alliance Meeting
  • 22/5 – 18:00 pm – Taking Civil Society Engagement to New Heights
  • 23/5 – 8am – 11am – WHO Civil Society Working Group on the third High-level Meeting of the UN General Assembly on NCDs
  • 23/5 – 16:30 pm – From the Ground Up: NCDs, TB and Resilient Health Systems
  • 23/5 – 19:00-19:50 – ADI Side Event: Mobilising Society: Inspiration for developing national responses to dementia
  • 24/5 – 7:30 am – Changing the Story: Creating a New Obesity Narrative
  • 24/5 – 12:30 pm – Reducing Sugar, Salt and Fat to Prevent NCDs: Bold Initiatives and Success Stories
  • 24/5 – 16:30 pm – Human Rights in Global Health
  • 24/5 – 8 -10 am – Global Health Council, Living Goods, IntraHealth International, Frontline Health Workers Coalition – Diverse Pathways and Partnerships to Universal Health Coverage

Other involvement including times and days to be advised in our role working with  Worldwide Hospice Palliative Care Alliance,  are based on their goal to “To build increased commitment for an essential package of palliative care as part of UHC amongst WHO and member states”. 

I’ll do my best to keep DAI members and supporters updated each day, as the Assembly progresses and outcomes from the many meetings and Side Events I am involved in take place.

Kate Swaffer, DAI Chair, CEO & Co-founder
#WorkingForAllPeopleWithDementia

Dementia Friendly Kiama, by Dennis Frost

Dennis Frost is a member of Dementia Alliance International and also the Inaugural Chair of the Southern Dementia Advisory Group in Kiama NSW, which guides the DFC pilot project between the Kiama Council, University of Wollongong and which Alzheimer;s Australia were also involved in nationally. Many consider this to be the gold standard dementia friendly communities project globally.

Dennis is from NSW and was a keynote speaker at the ADI20-16 conference in Budapest this year titled Dementia Friendly Kiama, which you can view here:

 

Please note: If you are watching this free video, and are employed or can afford to donate the fee you would have paid to attend on the day of $45 USD, please donate here – http://www.dementiaallianceinternational.org/donate/

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.

Join DAI here www.joindai.org

Or you can subscribe to our newsletter or weekly blog here www.infodai.org

YOUR donation ensures there will be ‘Nothing about us, without us’.

 

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.

SEBASTANO CARDI VP of CRPD
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.

Communication Challenges – Being Curious, Cautious, and Courageous, by Teepa Snow

In March, we hosted a Webinar with Teepa Snow, which was informative, and very well attended. This week, as part of our Dementia Awareness Week UK #DAW2016 activities, we are adding the recording of it here. Our gratitude to Teepa for her time ad wisdom, and deep knowledge about how to support people with dementia.

Together, we earn from each other, and together respecting and listening to each others unique view points, we can all make a difference.

Please do consider donating, especially if you are employed as you would have paid $45 USD to have attended to listen to Teepa on the day. Our current fundraising campaign can be accessed here…

Your donations help people with dementia support themselves to live with a higher quality of life, and more independence, as well as reducing stigma and discrimination.

Watch the video of Teepa here:

Download the slides here: Teepa Snow: Communication Challenges – Being Curious Cautious and Courageous

 

Communication challenges: Being Curious, Cautious and Courageous

Teepa Snow-2

  • Wednesday 27, 2016 (USA/UK/CA/EU)
  • Thursday 28, 2016 (AU/NZ/JAPAN)

Communication challenges: Being Curious, Cautious and Courageous

About Teepa’s session: Living life with dementia inside is an ever-changing experience. Sometimes challenging, sometimes boring, sometimes overwhelming, and sometimes just fine. But it is not like it used to be, no matter how much we might wish it was so. One difficulty is that others may not experience you and your perceptions the same way you do. It is often easier for me to blame the change on you and your dementia than look in the mirror and notice how much of what is happening might be due to how I am being different or changing. With dementia, each of us is not always sure about what each person thinks, remembers, hears, sees, feels, but it is easy to react rather than respond. In this session, I will provide six puzzle pieces to help each of us consider the gifts of curiosity, caution, and courage to help when we are trying to work and live with one another and we have dementia in the house!

About Teepa: Teepa is an occupational therapist working as a dementia care and dementia education specialist. She has over 33 years of clinical experience in the field of geriatrics and dementia care, as well as having provided care to family members with dementing illnesses. Currently, she has an independent practice as well as a clinical appointments with Duke University’s School of Nursing & UNC-CH School of Medicine. She provides interactive and creative educational and practical hands-on training sessions to organizations and providers throughout the US & Canada. She has been actively involved in teaching and clinical research projects throughout her practice career.

Wednesday April 27, 2016, USA/CA/EU/UK:
Start Time (USA/CA/UK/EU):
2.00 p.m. Pacific Time (San Francisco AND Oregon, Portland);
3.00 p.m. Mountain Time (Denver);
4.00 pm Central Time (Chicago)
5.00 p.m. Eastern Time (Washington DC);
2.00 p.m. Vancouver, Canada;
11.00 a.m. in Honolulu, Hawaii;
10.00 p.m. in the UK;
11.00 p.m. in Paris and Budapest

Thursday April 28, 2016 AUSTRALIA/NEW ZEALAND/JAPAN
Start time (Australia/NZ/Japan/Indonesia)
7.00 a.m. in Brisbane;
7.00 a.m. Sydney, Canberra, Melbourne;
4.00 a.m. in Perth;
6.30 a.m. in Adelaide;
9.00 a.m. in Auckland, New Zealand;
6.00 a.m. in Tokyo, Japan

The WEBINAR will run for 1.5 hours, and you can REGISTER here

To check the time in your city, if not listed above, please open the link here:
http://www.timeanddate.com/worldclock/fixedtime.html?msg=DAI+A+Meeting+of+the+Minds+with+Teepa+Snow%2C+April+2016&iso=20160427T14&p1=202&ah=1&am=30

You will receive an email confirmation that contains login details and instructions on how to join the online Webinar.

Note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.

We charge a minimal fee of $US45 for anyone who is employed. Most will be able to claim the cost of the tickets as a tax deduction.

Students who are full time and unemployed are charged $US15 – please send proof of your student ID to [email protected]

Please note: We rely on an HONOUR registration system, and trust that if you are employed, you will not instead register as an unemployed family supporter (carer). The modest fee for this service supports your education, and also supports our work, which importantly, directly enables people with dementia to support themselves.

If you need a certificate of attendance, please email us at [email protected]

The Webinar is FREE for people with dementia and unemployed family care partners.

REGISTER here…

Please note: we have set up this event based on the time zone in Australia, to ensure the registration system does not close ahead of the Webinar – but  – it is still the same time for everyone, April 27 in the USA/UK/EU and April 28 in Australia/NZ.

Note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.

Your donations are always appreciated and do make a difference:

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 50.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 100.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

Option: Our nonprofit partner, PayPal charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International.

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.

Stepping Out of the Shadows, by Helga Rohra

Stepping Out of the Shadows: Why I am Advocating for the Rights of People with Dementia

Screen Shot 2016-02-13 at 10.55.12 amThis week, we are publishing an excerpt of one of our Board members book, Ms Helga Rohra, translated from the original German, by Peter Mittler.

Thank you Helga for sharing it, and thank you Peter for translating it. It is excellent to report that the book is to be translated into English soon.

 

Helga Rohra: Stepping Out of the Shadows: Why I am Advocating for the Rights of People with Dementia.: Mabuse Verlag, Kasseler Str. 1a, 60486 Frankfort am Main; Tel. 069-70-79-63-13. 2011; e-reader 2014.

INTRODUCTION

“My name is Helga Rohra. I am 62 years old, a single parent and simultaneous translator and have been living with a diagnosis of dementia for more than seven years. I would like to convey to you how this diagnosis has turned my life upside down, the challenges I have to confront and how I have succeeded in giving meaning to my life.

But don’t worry, my journey is neither a horror story about the long road to oblivion nor an account of the hardships encountered; quite the contrary.

If you yourself are living with dementia or are aware of symptoms suggestive of dementia, allow me to tell you: dementia is not the end! Even with dementia, you can lead a full and enriched life if you can come to terms with your difficulties. I don’t want to sugar-coat anything. Dementia is not child’s play. It makes new demands on you every day. But believe me, you can live with it.

If you come into contact with people with dementia or work with them as a professional or as a member of an organisation, I invite you to listen to what I have to say. Reading this book may help you to arrive at an understanding of the early stages of a dementia journey. But be warned! In some of these experiences, our supporters receive a mild reprimand which should not be seen as an attack but as constructive criticism.

First and foremost, I am speaking for myself in reporting on my experiences as an activist. Others will interpret their experiences in different ways. I make no claims for the universal validity of any generalisations which I have been unable to resist. I particularly want to draw attention to the particular life situation of younger people with dementia because our needs may differ from those of older people – a rarely discussed issue, in my opinion.

On the many occasions when I am asked how my life has been changed by dementia, I find it difficult to provide an answer. I might be asked to reflect on something that was once important to me and consider whether or not it remains important. These processes are challenging. Memories are unreliable for all of us, not just people with dementia. We all have cause to question whether our memories correspond to the truth. Consciously or unconsciously, most of us treasure our successes and supress our setbacks. Each re-telling of a story differs slightly from its predecessor because any story from the past reflects the experience of the present. This happens to all of us but dementia makes it harder to remember.

For me, the past is no longer the firm rock on which to build the present. There are times when the search for memories is like walking on a bog that seems firm and safe but can suddenly swallow and then release you. So the answer to the question about life changes brought about by dementia always depends on what I can remember at the moment when the question is asked. That is the reason why I need to explain how I came to write this book.

I would like to be able to tell you that it was publishers who asked me to write this book, that I was delighted to accept their offer and immediately sat at my desk and feverishly began to write. Sadly, it was not that simple. Dementia has made it so difficult for me to conjure up memories that I no longer feel able to write about them. Certainly, I was asked if I wanted to convey my experiences as a person affected by dementia. Easy as it still is for me to talk about my experiences, dementia has robbed me of the ability to write longer passages about them.

So how were my spoken words and scribbled notes to become the book that you are now reading? The simplest solution seemed to be the kind of ghost writer who assumes full responsibility for writing but remains invisible. Such a role was unacceptable both to me and to the publisher because I did not want to give the impression that I had written the book from beginning to end.

My book partner is Falko Piest who styles himself as my writing assistant – a role he had successfully carried out for an earlier book to which I had contributed. We got to know one another in 2009 and worked together to produce a chapter in I Speak for Myself: People with Dementia Speak Out which at that time was published under my pseudonym Helen Merlin. Since then, he and I have become an experienced team, writing several articles and taking part in many public events. As a member of the Stuttgart Dementia Support Group promoting the participation and voice of people with dementia, Falko Piest has a strong professional involvement in the perspective of people affected by dementia.

To produce this book, Falko listened to me for hours on end, asked me many questions and held long discussions with me. What follows is the outcome of many tape recordings of our conversations, together with my notes and diary entries – not piece by piece or chronologically but in chapters. Every time an episode was described, he sent me the text for comments and suggestions for changes. Gradually and step by step, a complete book was created.”

 

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).

References

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).