Reading material on ageing and Down syndrome:

The (US) National Down Syndrome Society has co-hosted two conferences on aging and Down syndrome. Full conference presentation videos and slides on their website

• Growing Older with Down Syndrome Conference, 2015
• Age of Change Conference, 2013

Alzheimer’s disease in people with Down’s syndrome: the prospects for and the challenges of developing preventative treatments

Paula Castro, Shahid Zaman, Anthony Holland,

Cambridge Intellectual and Developmental Disabilities Research Group, Department of Psychiatry, University of Cambridge, Cambridge UK

Journal of Neurobiology (open access Neuro Update), 24 October 2016

Abstract: People with Down’s syndrome (DS) are at high risk for developing Alzheimer’s disease (AD) at a relatively young age. This increased risk is not observed in people with intellectual disabilities for reasons other than DS and for this reason it is unlikely to be due to non-specific effects of having a neurodevelopmental disorder but, instead, a direct consequence of the genetics of DS (trisomy 21). Given the location of the amyloid precursor protein (APP) gene on chromosome 21, the amyloid cascade hypothesis is the dominant theory accounting for this risk, with other genetic and environmental factors modifying the age of onset and the course of the disease. Several potential therapies targeting the amyloid pathway and aiming to modify the course of AD are currently being investigated, which may also be useful for treating AD in DS. However, given that the neuropathology associated with AD starts many years before dementia manifests, any preventative treatment must start well before the onset of symptoms. To enable trials of such interventions, plasma, CSF, brain, and retinal biomarkers are being studied as proxy early diagnostic and outcome measures for AD. In this systematic review, we consider the p and their evaluation.

• The full text of the article is available to read online without charge.
• Citation: Castro, P., Zaman, S. and Holland, A. J Neurol (2016). doi:10.1007/s00415-016-8308-8

New resources from Down Syndrome Australia

Down Syndrome Australia has published three new resources, all free to read and/or to download from the DSA website:

Ageing and Down Syndrome
- a 30 page booklet

Down syndrome in the workplace for employees  
- a 12 page booklet

Down syndrome in the workplace for employers  
- a 20 page booklet,

People with Down syndrome

Caroline Brunner: pioneering Canberra public servant with Down syndrome retires

Natasha Rudra, Canberra Times, 26 August 2016
For nearly 25 years, Caroline Brunner has lit up the offices of Housing ACT in Belconnen, bringing the mail with a smile and a kind word, and putting together housing application kits - an estimated 250,000 of them in her long career. The Canberra public servant retired on Friday with a big party and a bit of media attention ...

Loretta Neiter, Possibly Oldest-Living Person In U.S. With Down Syndrome, Has Demonstrated Good Work Ethic But Also Makes Time To Enjoy Herself
Nancy Ortega, St Genevieve Herald, 30 August 2016
Treasures come in all shapes and sizes. We have a pint-sized treasure living in Ste. Genevieve on Pointe Basse Drive. Her name is Loretta Neiter. She appears to be the oldest-living person with Down Syndrome in the United States.

Family and staff at Ste. Genevieve Group Homes researched it online. From what they can ascertain, Loretta is several months older than the person recorded as being the oldest ...

Unique program opens doors for people with intellectual disabilities

Centre for Disability Studies, 6 September 2016

Young people with intellectual disabilities will be embedded as paid interns in two leading Australian organisations, including the Commonwealth Bank of Australia (CBA), as part of an innovative new program at the University of Sydney ...

Recent news on Alzheimer's and Down syndrome

Adult Down Syndrome Centre posted about Alzheimer's disease and the possibility of a vaccine on 4 August 2016, via their Facebook page:

Could a vaccine prevent and/or treat Alzheimer disease?  There is interest in this topic.  Could it be given to people with Down syndrome? 

There is a study in San Diego looking at safety of the vaccine in people with Down syndrome. 

We have started discussion about how the ADSC could be involved in the next phase of study that would focus on efficacy of the vaccine.

• Is a vaccine that protects against Alzheimer’s on the horizon?, Julie Nakis, Health eNews (Advocate Health Care), 28 July 2016

Aging Poses New Challenges For Those With Special Needs

Vikki Ortiz Healy, Chicago Tribune/TNS,  1 August  2016

... when the 56-year-old woman with Down syndrome began forgetting her work schedule, becoming disoriented around campus and feeling too confused to do her job in the mailroom, administrators at the Catholic facility moved her to a new program designed to meet a need that advocates say will only be more pressing in the years ahead: caring for people with disabilities as they age ...

(US) Alzheimer's Association issues $7M challenge to scientists to speed drug discovery

Global Down Syndrome Foundation, 2 August 2016

... “The importance of the 'Part the Cloud Challenge' from the Alzheimer’s Association cannot be overstated,” said Dr. Potter, who is director of the Rocky Mountain Alzheimer’s Disease Center and professor and director of Alzheimer’s disease research, Department of Neurology, Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine. “The million dollars, with a potential for another $3 million after two years, will certainly propel novel research forward towards a therapy for Alzheimer’s. For my research, the hope is that Leukine, an FDA-approved drug, may slow or even prevent the progression of Alzheimer’s disease. That would be a home run for everyone.” ...

New book releases

Entwined, by Joyce Wallace Scott, is due to be released 28 June 2016

Judith Scott, despite the challenges of Down syndrome, profound deafness, and thirty-five years of institutionalization has recently been hailed as "One of the most important artists of the twentieth century”, and through television and the press, her mythic journey from dark institutional anonymity to international acclaim has attracted widespread public attention.

In Entwined, Joyce Wallace Scott takes us on a powerful voyage of self-discovery through her twin sister’s silent world, providing a moving account of their shared childhood, in which may lie the origins of Judith’s latent creative genius. It is an epic story of love and determination; of vulnerability and powerlessness; of disability and genius ... read more here

Finding a Way, by Graeme Innes, former Australian Disability Rights Commissioner
... after a long and successful career – from lawyer to company director to Human Rights Commissioner – he has written his story. Finding a Way shares his memories of love and support, of challenges and failures, and of overcoming the discrimination so many people with disabilities face ... read more here

Book launch in Sydney 19 July 2016 in Sydney - tickets

Dennis McGuire to visit Australia: Mental Wellness and Healthy Ageing 2016

Down Syndrome NSW is delighted to announce that Dennis McGuire PhD, internationally renowned Down syndrome behavioural expert will visit Australia in May, 2016. Dennis is co-author of Mental Wellness in Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome.

Dennis McGuire is a highly sought after speaker on the areas of mental wellness and ageing in people with Down syndrome (DS).  In 1992 Dr McGuire, with colleague Dr Brian Chicoine MD, established The Adult Down Syndrome Centre  in Chicago. During his tenure as Director of Psychosocial Services for the Centre, Dennis served the health and psychosocial needs of over 5000 adults with Down syndrome. In 2013 he joined the Global Down Syndrome Foundation to establish a centre of excellence for the care of adults with DS and is now in private practice. He regularly presents at national and international conferences and has contributed to numerous publications.

Dennis McGuire will present a series of seminars in Melbourne and Sydney for parents, carers and service providers. There will be separate professional development seminars for health professionals with an interest in intellectual disability.  Interactive webinars with Dennis McGuire will be announced shortly for people living outside the Melbourne and Sydney areas.

‘Dennis is a warm and engaging speaker with a wealth of lived experience in understanding people with Down syndrome and creating the best conditions to encourage mental wellness,’ said Margot Elliffe, DS NSW Board member and chair of the Mental Wellness and Healthy Ageing 2016  Tour Committee.  ‘This is a unique opportunity for anyone in the Down syndrome community to get first-hand information to support healthy ageing and mental wellness for all people with Down syndrome'.

Dennis McGuire will be in Melbourne on May 6 (professionals) and 7 (family and carers), and Sydney on May 13 (professionals) and 14 (family and carers), 2016.

For further information call 02 9841 4444 or click register Mental Wellness and Healthy Ageing 2016

 Mental Wellness of Adults with Down Syndrome  2006,
 The Guide to Good Health for Teens and Adults with Down Syndrome 2011.

Long lives

Image: Martha Perske

In addition to frequent questions about life expectancy for people with Down syndrome, we are asked from time to time whether a particular person with Down syndrome might be the oldest on record. It is always interesting to hear of another long life, such as this tribute to Gwendoline Heath, who died recently in the UK, aged 76:

Tributes to 'wonderful' Gwendoline

The York Press, 25th September 2015

The “wonderful woman” was described by carers as full of mischief and humour, and was very popular among family and friends until her death from pneumonia on September 16.

Her niece Janet Baker, the daughter of Gwendoline’s sister Murial, said: “She was the most loving, caring, aunt that anybody could wish for.

“Despite all of the things life threw at her she always had a lovely smile and a hug for everyone ...

As life expectancy increases (at the same time as birth incidence decreases), so does the imperative for policy development and planning to meet the needs of more older people with Down syndrome, for many years to come.

Some earlier articles about very old people with Down syndrome:

• Longevity of a Woman With DownSyndrome: A Case Study (1996)
• Alison Durham celebrates her 80th birthday (2010)
• Oldest man with Down syndrome dies at 83 (2012)
• One of the UK's oldest men with Down's Syndrome celebrates 70th birthday (2013)

Removing dying and death ‘double taboo’ for people with intellectual disability

From HammondCare, timed to coincide with Dying to Know Day on August 8. It is an annual day of action dedicated to bringing to life conversations and community actions around death, dying and bereavement. More here.

People with intellectual disability will be helped to overcome a “double taboo” in talking about dying and death through a new toolkit designed to train care staff.

A Chief Investigator with the Dying To Talk project, HammondCare’s Associate Professor Josephine Clayton, said there was already a widespread taboo in society in regard to talking about dying, death and bereavement.

This becomes a “double taboo” for people with an intellectual disability when well-meaning care staff and loved ones seek to protect them from end of life realities.

A/Prof Clayton said the Dying to Talk project has sought to research the needs of people with an intellectual disability in understanding and discussing dying and death and also the best ways of communicating these issues.

DS NSW: Older Parent Network Event

The overwhelming response to our recent survey on your needs as older parents of adults with Down syndrome identified the top two areas of interest as the National Disability Insurance Scheme (NDIS) and accommodation.

Older Parent Network Event - two events on separate days, at different locations. The topics on both days will be the same:

• The NDIS and how to prepare
• Accommodation options, experiences and models

There will be opportunity for Q and A, library resources on a range of topics, and Down Syndrome NSW staff will also be available.

9:30 - 12:30 Wednesday 19th August 

Parramatta Park Event Centre in Parramatta Park (MAP) 

or

9:30 - 12:30 Saturday 22nd August  

Mary Mckilliop Place 7-11 Mount St North Sydney (MAP) 

Please choose the time and location that suits you best.

RSVP: 10th August
Cost: Down Syndrome NSW Members $30 and $35 non-members, morning tea will be provided

Register: Register Here

If you have any questions regarding this event please contact the Down Syndrome NSW Office:

Jane Gilsenan | Community Networks E: jane.gilsenan@dsansw.org.au 

Intellectual Disability and Dementia: workshop for support professionals

Note: the closing date for registrations is tomorrow, 21st January 2015

Click here for the detailed flyer and registration form

Down Syndrome and Alzheimer's Disease: What Caregivers Should Know: online video

Video of an information meeting at the Adult Down Syndrome Clinic, in Chicago, recorded May 27, 2014

Down Syndrome and Alzheimer Disease: What Caregivers Should Know 

Presented by Brian Chicoine, MD (Clinic Director) and Daniel Kuhn, LCSW, (Community Educator, Rainbow Hospice)

Topics covered

• Symptoms, diagnosis, treatment and prognosis
• Ways to support someone with DS and Alzheimer Disease
• Ways to cope
• Questions and answers from the audience
• 1 hr 42m 30s

The video employs a split screen to display both the speakers and their presentation slides.

The Adult Down Syndrome Clinic staff have asked, via their Facebook page, that we all ... 

... please share this with families, staff, and anyone else who knows, loves, cares for, and/or serves a person with Down syndrome and Alzheimer disease ...

and they have commented that ...

... it does require a time commitment to watch the whole video (1 hour and 40 minutes). However, following the recommendations on approaching a person with DS and AD (particularly in the second half of the video) will likely have a much greater time benefit and numerous other benefits for the audience ... The challenge of Alzheimer disease is substantial. We have walked (and we continue to walk) with many families through this journey. We are thrilled to be able to share this with the families we serve but also to a wider audience.

To investigate Down Syndrome NSW resources on Alzheimer's disease and Down syndrome by visiting the Members' Library Catalogue here.  

• To contact Jo at the library, ph. 9841 4410, or email library@dsansw.org.au

Ageing Well - a UK Learning Disability Week project

This week is Learning Disability Week in the UK (where 'learning disability' is the commonly used term equivalent to 'intellectual disability').

The British Institute of Learning Disabilities is marking the week with a series of five emailed newsletters ' focusing on promoting a better understanding of the lives and needs of older people with a learning disability.

The first issue is introduced with a brief explanation of the aim of the project:

We decided to focus on this topic as delegates at a recent seminar told us that there needed to be more done to promote the issues relating to good support for older people with a learning disability. So we're starting now!

Issue 1, Understanding the lives and needs of older people with a learning disability - what do older people say?

Today we focus on what older people are telling us about what is important to them and we're also looking at some of the background information about support for older people with learning disability.

Issue 2, Understanding the lives and needs of older families and family carers

... Many older family carers worry that their son or daughter is living a prematurely ‘old’ lifestyle because they share the social networks of their parents. As family carers grow older, and sometimes frailer, their social and support networks shrink exposing them to the risk of growing isolation (Magrill 2007) ...

Issue 3, The challenge for providers in planning and delivering good support for older people with learning disabilities

... There was a realisation by some staff that they perhaps don’t record all of the information they know about people’s lives, history, what’s important to them, what makes a good and a bad day, so that if they weren’t there someone else would at least know what was important to the person, important routines etc ...

Issue 4, Delivering good health, wellbeing and dementia support for older people with learning disabilities

... People with learning disabilities share many of the same age related physical and psychological changes as other older people. People with learning disabilities are, however, 2.5 times more likely to have health problems than other people but are often poorly served and discriminated by health services (Department of Health 2001; Emerson and Baines 2010; Mencap 2012) ...

Issue 5, Delivering good support for older people with learning disabilities - what next?

We've been delighted by the many responses we've received to this year's learning disability week work around ageing and people with learning disabilities. The responses on Twitter, Facebook and by email have made clear that raising these issues have struck a chord, both for individuals and organisations ...

Of course, similar issues arise for older people and their families here too, and this series is a useful introduction to BILD's existing resources designed to support older people.   Scroll to the bottom of each issue for links to subscribe, and/or follow BILD on Facebook.

New online ...

Image:Pixabay.com

Meet the Governors of the NDIS - a webinar on working together to build the NDIS 

This webinar, held on16 April 2014 is now available to view online
The panel discussed working together to build the NDIS and responded to questions about the Scheme from an online and theatre audience. Answers to questions submitted during the webinar which were not responded to on the day will be published shortly.

From the Department of Developmental Disability Neuropsychiatry (3DN), UNSW

• Successful Ageing for People with Intellectual Disability 

Associate Professor JulianTrollor presented a talk at a forum held at NSW Parliament house on Monday 7th April. The talk outlined potential strategies to address the health issues related to ageing in people with an intellectual disability. The talk was part of a series of presentations in a Forum entitled “Dementia and Disability: The Facts, Strategies and Implications”, organised by Alzheimer’s Australia NSW, the Centre for Disability Studies at the University of Sydney, and the University of New England.  The presentation is now available online here

• Submission to the National Mental Health Commission’s Review of Mental Health Programs and Services

3DN recently made a submission to the National Mental Health Commission’s Review of Mental Health Programs and Services. More information on the review can be found on the Commission’s website.

3DN completed responses to the Commission’s survey and summarised our feedback in this report.

Trevor Parmenter Annual Lecture: Prof Matthew Janicki

Matthew P. Janicki, is research associate professor of human development at the Institute of Disability and Human Development at the University of Illinois at Chicago and an Adjunct Professor at the School of Rural Medicine at the University of New England. 

Currently he serves as the co-chair of the National Task Group on Intellectual Disability to Dementia Practices in the USA. 

Tuesday, 8th April 2014 

Lecture 6pm – 7pm followed by light refreshments

Camperdown 

No charge, however bookings are essential 

RSVP: By Wednesday 2nd April 2014

Detailed flyer and booking form 

Prof Matthew Janicki: Symposium on dementia and Trevor Parmenter Annual Lecture

Professor Matthew Janicki will be visiting Sydney during April. Professor Janicki is a world renowned researcher on ageing and intellectual disability. He will be speaking at two public events, which Down Syndrome NSW members are encouraged to attend.

Dementia and Disability: the facts, strategies and implications
A symposium hosted by Alzheimer’s Australia NSW, the Centre for Disability Studies at the University of Sydney and the University of New England, to be held at NSW Parliament House, Sydney

• Flyer with details of all speakers, and registration

Miriam Philomena from Down Syndrome NSW will be participating as a panellist discussing "Building better practice approaches" in the afternoon session.

Monday 7 April
9.30am - 4pm
Cost: $99


Trevor Parmenter Annual Lecture
Tuesday 8 April
6pm - 8pm
Details of venue and bookings will be available shortly from the  Centre for Disability Studies 

Keep the music playing ...

"They all love music!" ... a stereotype, a cliche, likely to set the teeth of many parents of children with Down syndrome on edge. It often comes across as a well meant platitude, ignoring that just about everyone, no matter how many chromosomes they have, or their age, enjoys music of some kind. Perhaps most people with Down syndrome are simply less inhibited than some of us about their enjoyment.

However, Music and Memory, brought to our attention by the good people at The Successful Ageing in Intellectual Disability Study (UNSW) via their Facebook page, might be of great interest to those caring for older people with Down syndrome and Alzheimer's disease. We know that Alzheimer's can occur earlier in people with Down syndrome than amongst the general population.  A key aspect of  the success of Music and Memory is that the music chosen for each person's iPod needs to be carefully selected to match the music they have responded to in their younger years. A good reason to take note, and keep a record.

Music and Memory is not specifically designed for, nor based upon the needs of people with Down syndrome, but those with Alzheimer's disease - sometimes at quite an advanced stage.

Do take the time to scroll down to the 'Alive Inside' 6 minute video excerpt, and watch all the way through, even if it is not a current problem for your loved one with Down syndrome - what you will see is remarkable.

• Alive Inside: The Remarkable Story of iPods and Alzheimer’s, Vonnie Kennedy, Senior Planet, 30th October 2013

Intellectual Disability and Dementia: workshop for professionals

Alzheimer’s Australia is holding a free one-day workshop for professional staff  who work with people with an Intellectual Disability and Dementia within community, health and allied health services.

The workshop will cover:

• The major causes, signs and symptoms of dementia, and how these present in someone who has an intellectual disability
• Barriers to diagnosis and practices that assist in overcoming these barriers
• The impact of dementia on communication and strategies that support independence and engagement
• An understanding of the behaviour changes associated with dementia and ways to work with these changes and support the person

Tuesday 10 December, 2013
Eloura Blue Mountains Disability Service, Springwood

More information: 8875 4665

• View the flyer and registration form here

Forum on 'Ageing with a disability and the NDIS' - Bankstown

Futures Alliance and the Australian Association of Gerontology forum, in association with the Don't DIS My ABILITY campaign:

Implicit in the rollout of the National Disability Insurance Scheme, as well the current Aged Care reforms, is the promise of better outcomes for people with disability who are ageing.

Hear about the current policy landscape and  the latest research, and join us in a conversation to help shape the future for people with a disability who are ageing.

Guest speakers will include leading influencers and decision makers including Emeritus Professor Trevor Parmenter, among others.

Visit the AAG website for details about the speakers, and online registration.

• Download the fiier and registration form here.

Library Thursday, 15th August 2013

• Several titles from the UK Books Beyond Words series are in our library collection.  This promotional video explains why they were published, and how they can be used to support people with intellectual disabilities.  5m 53s

• Another new resource of interest to older people with Down syndrome and their carers - This is our space: ageing with disability is a booklet newly released by Dept of Families, Housing, Community Services and Indigenous Affairs. It addresses how community organisations can welcome older people with all kinds of disabilities into their groups and activities. It is free to download in several formats.

• Powerpoint presentations and photos from the Global Down Syndrome Foundation's Research & Medical Care Roundtable on held at the (US) National Down Syndrome Congress annual Convention in July are now up on the Foundation's website - free to download.

• The Down Syndrome Research Foundation in Canada, currently has available three online videos on reading, Successful Strategies for Beginning Readers with Down Syndrome, accompanied by a set of free, downloadable, printable resources.

New website: Intellectual Disability and Ageing

The content of the new website Intellectual Disability and Ageing is produced by the Australian Catholic University in conjunction with La Trobe University Australia and The University of Wisconsin-Madison.

The Victorian Department of Human Services (DHS) saw merit in the staff health manual and the training manual developed as part of a 2010 - 2012 research project having a broader audience. ... (DHS) agreed to fund the development of a website on intellectual disability and ageing, that would include the materials used in the research project, together with additional information, exercises and links to further resources for improving support for ageing people with an intellectual disability. The peak body National Disability Services (NDS) Victoria agreed to host the website on the NDS website. (Intellectual Disability & Ageing - home page)

While the website refers to some services and processes that are specific to Victorian health and disability services, there is much that will be useful to residential staff working in other States, making it a useful addition to the growing body of knowledge and resources available in this field.