Members of the NZDSA are invited to relive the best parts of the Virtual Down Syndrome Conference we hosted in October to celebrate the NZDSA 40th anniversary.

During the conference over 700 individuals and households joined one or more of the 22 events and presentations.

The 34 speakers hosted a staggering 2748 minutes of webinars, Q&A sessions and social gatherings.

Usually, organisations would charge large amounts to be part of such a comprehensive event, but the NZDSA decided to make the conference accessible as possible.

If you or your family enjoyed the conference and gained benefit from the information shared, we would like to ask you to show your appreciation by donating to the NZDSA.

As you can imagine, hosting the conference demanded significant resources from or staff, and we hope you will continue to support the NZDSA to enable us to host more events in the future.

If you missed the conference, the NZDSA has recorded some of the key webinars which are now available to view on our website.

The resources you find on the website are:

The Golden Years: Ageing and Down syndrome

An introduction to the needs of the older person with Down syndrome and how this may affect their health and wellbeing alongside the supports they may need.

Relationships – Theories and Practicalities

This session deals with a variety of issues that face everyone trying to create new relationships, but may be particularly challenging for someone with Down syndrome.

Supported Decision Making – a Human Right

This workshop will help participants to gain a greater understanding of the national and international legal context of Supported Decision Making, who may require decision making support, and the key principles and strategies for extending decision making support

Making visions work

Social skill development for identity across the lifespan.

Early literacy skills for children with Down syndrome – Families making a difference

Fiona will share tips for whānau, based on the latest research, about how whānau can set their child up for literacy success.

Individual Education Plan – The capabilities approach

The capabilities approach to a structured plan to explain, recognise, and deliver on all learning opportunities to fulfill goals and achievement for children and young people with learning disability and Down syndrome.

 

The NZDSA is extremely pleased we can offer our members an invaluable new resource to learn about the needs of the older person with Down syndrome, as well as a follow-up workshop to answer your questions.

The digital resource The Golden Years, Ageing and Down syndrome is presented by expert Geraldine Whatnell and discusses how ageing may affect their health and wellbeing, as well as supports they may need if they are diagnosed with dementia.

The valuable video offers background on a range of subjects and demonstrate best practice when supporting people with Down syndrome. The subjects include:

(Click here to watch or download the full video).

  • Ageing and Down syndrome
  • Importance of health checks
  • Explores the connection between  Down syndrome and dementia
  • Looks at the myths about Down syndrome and dementia
  • Assessment and diagnosis of dementia
  • Understanding dementia and the stages of dementia
  • Strategies we can use
  • How we can help people with Down syndrome who live with dementia.

Presenter Geraldine (Dina) Whatnell is the Nurse Practitioner Mental Health and Addictions Service Palmerston North Hospital.

Geraldine brings with her nearly 40 years of professional skills and knowledge in the specialist area of developmental disabilities (intellectual disabilities and/or Autism Spectrum Disorder) and mental illness.

Alongside this, Geraldine has a wealth of personal lived experience as her younger brother Mark having a diagnosis of Down syndrome .

Getting older is associated with many changes, both biological and social. For someone with Down syndrome these changes can be particularly daunting and difficult.

There is evidence to suggest that some biological problems related to ageing can occur earlier in people with Down syndrome than in the general population.

The marked improvement in life expectancy for people with Down syndrome (an average of 60 -70 years, compared to an average of 9 years around 1900) also means that the problems relating to the condition and old age are only now being researched and addressed.

Unfortunately,  there are very limited few resources available for families and whānau who support and care for aging people with Down syndrome.

The NZDSA recognises this gap and decided to develop this resource to start filling this void.

In New Zealand there is no strategy or plan to address dementia for the general population therefore there is even less knowledge, information and support for people with Down syndrome.

If you are interested you can read and support this open letter to the Government to be more pro-active in this area.

https://mailchi.mp/alzheimers/stand-with-us-sign-our-open-letter-to-government?e=59bc99ddea

Click here to watch or download the video.

You do not want to miss this.

Make sure you check out the long list of world-leading presenters, who will cover most key topics that may be important to people with Down Syndrome as part of the NZDSA Virtual Down Syndrome Conference.

REGISTER HERE

The NZDSA this month will celebrate its 40th anniversary by hosting the largest Virtual Down Syndrome Conference ever organised in this country, to coincide with World Down Syndrome Month.

The virtual conference will offer a stunning variety of high-profile Kiwi and international expert speakers who will cover a wide range of topics including education, health, speech, relationships, ageing and legal issues.

The conference will have several presentations focused on health with Andrea Simonlehner from Natural Equilibrium doing two sessions on gut health and fussy eaters, while Geraldine Whatnell will share her expertise on growing old with Down syndrome.

One session that will be exciting to parents as well as younger adults with Down syndrome will be relationship expert Dave Hicks talking about the theory and practicalities of getting into a relationship. Dave is likely to become a familiar face on New Zealand television as he was the expert on the upcoming television series Down With Love.

One of the speakers from the United States will be Kavita Krell from Massachusetts General Hospital who will explain how you can develop an innovative online health plan from anywhere in the world, while her colleague Dr Brian Skotko will do a presentation about and for siblings of people with Down syndrome.

REGISTER HERE

The conference will also offer sessions wellbeing, speech therapy, advocacy and educations, so there will be there something for all stages of life and every member of our community.

The conference will also include a number of sessions specifically for people with Down syndrome, so for the full list of those events, please click here (all these sessions are marked in orange below).

The NZDSA has hosted many conferences, seminars and workshops during its history, but geographical and financial restraints often restricted the number of people who were able to attend.

All those barriers have now been removed by modern technology and the new digital skills we have learned during lockdown.

With modern video conferencing technology, there is no reason to miss out so keep an eye on our E-new and Facebook page for upcoming details how to register.

To get all this information, make sure we can send you our newsletters, so please register your details on the NZDSA website FOR FREE, at www.nzdsa.org.nz

Some sessions will be recorded as a future resource, but many others will not, so make sure you do not miss out on the webinars you are interested.

The NZDSA is non-for-profit charity that receives no Government funding and fully depends on grants and donations, so when you register or think the webinars are of value to you and your community, please remember to make a donation, so we can continue to offer these services to raise the awareness and knowledge around Down syndrome.

REGISTER HERE

 

THE FULL PROGRAMME OF THE VIRTUAL DOWN SYNDROME CONFERENCE

Tuesday 5th October, 7pm – 8pm

Bridget Snedden, President of Down Syndrome International(DSi)

Theme: Wellbeing and Rights

Title:  Getting to the good life – The importance of having a vision

Audience:  Everyone

 

Wednesday 6th October, 7pm – 8pm

Dr Mark Sinclair, Private Practice

Theme: Wellbeing

Title: Keeping an Emotional Balance (At home with children and teens)

Audience:   Parents, whānau, professionals – all ages

 

Thursday, 7th October, 7pm – 8pm

Trish Grant, Director of Advocacy IHC

Theme: Education and Rights

Title: Are we there yet?

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Saturday, 9th October, 10am – 11am

Sir Robert Martin

Theme: Rights and Wellbeing

Title: From Institution to Knighthood

Audience: Everyone

 

Tuesday, 12th October , 7pm – 8pm

Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

Title: Supported Decision Making – a Human Right

Audience: Parents, whānau, professionals with a focus on youth and adults

 

Wednesday, 13th October, 7pm – 8pm

Dr Maree Kirk, Director, STPDS NZ

Theme: Education

Title: Individual Education Plan – The capabilities approach

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Wednesday, 14th October, 12pm-1pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Brain and Gut Health for people with Down syndrome

Please note this session will view the recorded session hosted in September (there will be no Q&A)

It will be beneficial to view this for the session with Andrea on the 27th October

Audience: Parents, whānau, professionals – all ages

 

Thursday, 14th October, 7pm – 8pm

Who: Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

What: Supported Decision Making – a Human Right. 

Audience: People with Down syndrome

 

Saturday, 16th October, 10am – 11am

Dr Brian Skotko,  Director of the Down Syndrome Program at Massachusetts General Hospital

and Susan Levine, Co-founder and social worker at Family Resource Associates, Inc.

Theme: Siblings 18+

Title: Adult brothers and sisters of siblings with Down syndrome: Exploring past experiences and current roles

Audience: Siblings 18+

 

Tuesday, 19th October,  7pm – 8pm

Fiona Kenworthy, Speech & language therapist

Clinical Director /Small Talk Therapy

Theme: Speech and Language Therapy

Title: Early literacy skills for children with Down syndrome – Families making a difference

Audience: Parents, whānau, professionals with a focus on early literacy skills (not age specific)

Hosted by UpsideDowns Education Trust and the NZDSA

 

Wednesday, 20th October, 7pm – 8pm

Dave Hicks, Academic Programme Manager – Unitec

Theme: Wellbeing

Title: Relationships – Theories and Practicalities

Audience: Parents, whānau, professionals – all ages

 

Thursday,21st October, 12pm -1pm

Gretchen A. Good, PhD, Senior Lecturer in Rehabilitation and Disability Studies, Massey University and Jane Lee, MSW, Tutor in Rehabilitation and Disability Studies, Massey University

Theme: Wellbeing and Rights

Title: Parenting during a pandemic:  Have any lessons been learned?

Audience: Parents, whānau, professionals – all ages

 

Thursday 21st October, 7pm – 8pm

Who: Dr Mark Sinclair, Private Practice

What:  Managing your feelings

Audience: People with Down syndrome

 

Saturday, 23rd October, 10am – 11am

Kavita Krell, Director of Customer Experience for Down Syndrome Clinic to You (DSC2U)

Theme: Health

Title: DSC2U: An online personal care plan for caregivers and primary care physicians

Audience: Parents, whānau, professionals  – all ages

 

Tuesday, 26th October, 7pm – 8pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Fussy Eaters

Audience: Parents, whānau, professionals – relevant for all ages

 

Wednesday, 27th October, 7pm – 8pm

Geraldine (Dina) Whatnell, Nurse Practitioner Mental Health and Addictions Service Palmerston North Hospital

Theme: Health

Title: The Golden Years: Ageing and Down Syndrome

Audience: Parents, whānau, professionals – focus on adults who are 25+

 

Thursday, 28th October, 7pm – 8pm

Who: Libby Hunsdale, Michael Holdsworth, Rochelle Waters, Amelia Eades, Luka Willems, Lily Harper, Carlos Biggemann, Bradley Lewis, Jacob Dombroski, Alfie Linn

What: Meet the Stars!

Audience: People with Down syndrome, but others are welcome to join

 

Saturday, 30th October, 10am – 11am

Dr Maree Kirk, Director, STPDS NZ

Theme: Education/Wellbeing

Title: Making visions work – Social skill development for identity across the lifespan

Audience: Parents, whānau, professionals with a focus on school-aged children

 

‘Stand Tall’ is a new app designed to dodge those tricky money situations – like getting to the end of the week and finding there’s no cash left for dinner.

The app is being developed by IHC and online gaming company InGame to make handling money easier for young people with disabilities who want to be independent.

“It’s a character-based game, so you choose your avatar – what you’re going to look like in the game,” says Phil Clarke, IHC Head of Library and Information Resourcing. “The background changes as you make decisions in the game and move around your flat and out to the gym or the movie theatre. As you move through the day there are various choices that have to be made.”

Phil says other characters or situations crop up that challenge what players plan to do and how they plan to spend their money.

Another key aspect of the game is shopping, particularly grocery shopping. Players are asked to decide what they’re going to eat.

Phil says each purchase has a consequence and players can see their available money dropping as they spend. But the consequences are not just monetary. The game has two bars for measuring progress – money and wellbeing. Players can go at their own pace and repeat stages, and a voiceover is available for people who can’t read the screen.

Phil says the idea of a resource to help young disabled people handle money was first discussed two years ago with Merrill and John Holdsworth. The Holdsworth Trust is a longstanding supporter of the IHC Library.

“We wanted to do something with teens with intellectual disability who were thinking of moving out of home. We knew that our initial audience would be people who were tech savvy,” Phil says.

The Holdsworth Trust donated $20,000 in seed funding to explore the idea of an online app with local digital technology company Optimation. Feedback was sought from people with intellectual disabilities and a parent of a teenager.

“It was teasing out what an online application would be and identify what some of the issues were for people who were looking to live independently,” Phil says.

“In the end we came up with the idea that we wanted something fun in the form of a game that would help people with money.”

A brief was written and IHC approached InGame, a gaming developer with a background in interactive training and educational games.

The new app will provide a fun way to help young disabled people handle money.

More money was needed to develop the game, and the timing was right. Post COVID-19, the Ministry of Social Development (MSD) had funding available for initiatives to help people with disabilities stay active and connected in their communities. IHC received $75,000 from the fund.

“We were successful up to a point. We got about half of what we were asking for. Funding from MSD is going to enable us to get to the point of a working prototype, but not a published app. But it will have all of the elements of the game that will be expanded in the published version.”

It will also be something to show potential funders. IHC is now seeking a further $100,000 to finish the project and to make the app free to download.

Please login or purchase a subscription to get full access to resources.

The New Zealand Down Syndrome Association has launched a wonderful new resource to fill a “huge void” for health professionals when dealing with new parents of a child with Down syndrome.

“We have received overwhelming feedback from parents and whānau that the health professionals they deal with in those whirlwind first days, often do not have the information they need, so we hope that this will help both parties fill this huge void,” says Zandra Vaccarino, the NZSDA’s National Executive Officer.

Vaccarino says that new parents deal with a variety of health professionals, from their midwife, early intervention team and paediatrician to the Plunket nurse and GPs.

“Often these professionals seem to think that one of the other will have given given parents and whanāu specific information on Down syndrome, but often the parents fall in a big information-free abyss,” says Vaccarino.

The National Executive says that the Down syndrome diagnosis is a surprise for many parents so they have lots of questions and need to learn more about Down syndrome as well as navigate where and how to access  support.

“Parents are looking for answers and support, but often the first conversations are unnecessarily stressful and very upsetting, when the health professionals have no information – or worse – provide misinformation,” says Vaccarino.

The new brochure, Tips For Health Professionals, provides professionals with resources, key contacts and useful tips on how to approach these vulnerable parents in a respectful and sensitive manner.

“In many cases, doctors, nurses or other support workers will have limited knowledge of Down syndrome and may not be aware of the amazing resources and support organisations available to the parents.”

A large section of the brochure covers the language professionals are suggested to use and what phrases to avoid, as they may be considered offensive or archaic.

The brochure also includes a milestone map specifically for children with Down syndrome.

“Usually parents are given a milestone list for typical children. Having a specific Down syndrome road map will provide parents with realistic expectations about their child’s development and hopefully avoid unnecessary concerns and frustration.”

Health professionals and anyone interested in people with Down syndrome can download Tips For Health Professionals, and other resources on the NZDSA website. The resources are free to download once you have registered your contact details.

 

 

Actor Duncan Armstrong stars in a series of new videos released by the Health and Disability Commissioner and the Nationwide Health and Disability Advocacy Service to help people with learning disabilities think about their own experiences with using disability services and their rights under the Code.

There are five videos, each with a different story. The videos look at how Sam, played by Duncan, and his friends use disability support services and how they resolve any concerns that they have.

The videos were produced by Film for Change Aotearoa and made locally in Wellington with Wellington actors, including people who use disability services.

Each video has a closed captions option, and the closed captions and slides have been transcribed into Word documents. Deaf Aotearoa has created New Zealand Sign Language (NZSL) for each video.

 

Dementia is more common in people with Down syndrome than the general population. Liz Evans and Tanya Duckworth review research on why this is the case, along with recommendations for how families can support a loved one with dementia.

The term dementia doesn’t refer to one specific disease but a set of symptoms caused by a number of different brain disorders. Dementia results in a decline in a person’s mental abilities–their capacity to think, reason, and remember.

Most people with dementia will experience changes like:

  • declines in memory, with more recent information or events being harder to remember
  • difficulty concentrating
  • difficulty finding the correct words to say
  • reduced capacity to plan, to pay attention, and poorer judgement
  • feeling less motivated
  • personality and behaviour changes.

When dementia occurs in people under the age of 65, it is called ‘younger onset dementia’.

There are many different types of dementia with different patterns of symptoms. The most common form is Alzheimer’s disease. People with Alzheimer’s disease show progressive memory loss and a gradual decline in other skills. Their brains show changes in the form of a build-up of sticky plaques between the brain cells and tangles within the cells1.

Dementia is not a normal part of ageing.

Normal ageing does mean that the brain slows down, and it is common to find it harder to remember things as we age. However, forgetting recent events and conversations, forgetting the names of family members, and losing skills we once had are not normal at any age.

 

But changes in a person’s memory and thinking skills can also be caused by other medical conditions, many of which can be successfully treated.

Examples include:

  • a vitamin or mineral deficiency
  • a mental health problem such as depression
  • problems with sight or hearing
  • a side effect of new medication, or even a change in how their body deals with existing medications
  • an underactive thyroid (hypothyroidism)

 

Some of these conditions are more common in people with Down syndrome than the general population. So, any time a person is showing a decline in their thinking or memory, or changes to personality and behaviour, it is important to talk to their doctor about it straight away.

 

How common is dementia in people with Down syndrome?

Dementia, particularly Alzheimer’s disease, is much more common in people with Down syndrome than the general population and it tends to occur at a younger age. Scientists believe this is because a gene on chromosome 21 called the amyloid precursor protein (APP) gene plays a major role in the brain changes associated with Alzheimer’s disease. Genes are a code for proteins, and because most people with Down syndrome have three copies of this gene, they get more of its protein1.

 

Different studies have found very different rates of dementia in people with Down syndrome, ranging from under 10% up to 49 years of age, to around 30% for those in their 50s, and over 50% for those aged over 602. One recent study found a rate of just over 50% in those over 60 years3, but another recent study found a rate above 80% in those over 654. he average age for diagnosis is in the mid 50s4.

 

he outward symptoms of dementia do not start for some years after this and somelive into old age without developing symptoms3. So, it is not inevitable that a person with Down syndrome will get dementia but, due to the increased risk, it is still likely.

 

What are the signs of dementia in people with Down syndrome?

In people without Down syndrome, the earliest signs of Alzheimer’s disease are usually memory problems. But in people with Down syndrome, the first signs noticed by carers are more likely to be changes in behaviour and personality, such as increased stubbornness and behaving inappropriately. Other early signs include difficulty paying attention and lower ability to plan, solve problems, and make judgements5, 6.

 

Other changes may include 5, 6:

  • apathy
  • social withdrawal
  • increased dependency
  • confusion
  • prolonged sadness
  • fearfulness
  • repetitive speech
  • getting lost or disoriented in familiar places
  • irritability or aggression
  • seizures for the first time in adulthood

 

 

What is the latest research on dementia in Down syndrome focused on?

Scientists are working in a number of areas to further knowledge about the link between Down syndrome and dementia. Two important areas of current research are regarding diagnosis, and possible future treatments.

Our own research team is conducting the Successful Ageing in Intellectual Disability (SAge-ID) Study. One of the aims of that study is to compare different screening tools and assessments that may be suitable for people with intellectual disability, including those with Down syndrome. A further aim is to look at the factors associated with a higher risk of dementia in this group. People with intellectual disability aged over 40 can participate in the study, including those with or without dementia. This is to ensure a good a mix of those who are healthy and those experiencing declines.

Other researchers are looking at different biological markers that might be able to identify the brain changes associated with Alzheimer’s disease much earlier, even before cognitive symptoms begin. Examples include protein changes in a person’s blood, new types of brain scans, and measuring brain waves through EEG. If such measures could reliably detect brain changes earlier, then this could one day aid in directing specific therapies during the window before symptoms start1, 7. It could also help researchers as they try to develop and test future therapies focused on preventing dementia.

Certain medications can help to slow the rate of cognitive decline in some people who have dementia. However, studies with people with Down syndrome have found inconsistent results about whether these medications are effective, though some case studies suggest they may be for some people8, 9. However, people with Down syndrome may have an increased risk of side effects from these medications9.

Newer research is trying to develop future treatments that could prevent or alter the course of Alzheimer’s disease7, not just address the symptoms. Much of the research on drugs and neurotransmitters (brain chemicals) is done initially using mice. The safety and usefulness for humans then needs to be established.

 

A handful of studies have also looked at whether antioxidants could prevent or slow Alzheimer’s disease in people with Down syndrome10. So far, the results have not found that antioxidants worked to prevent decline8. Instead, results have pointed to the highly complex nature of the brain changes that lead to cognitive decline in people with Down syndrome. Much more research will be needed before scientists can identify specific supplements that may reduce dementia risk in people with Down syndrome.

Are there factors that increase–or decrease–the chances that a person with Down syndrome will develop dementia?

 

There is only a small amount of research about risk factors specific to people with Down syndrome. A handful of case studies suggest that people with atypical forms of Down syndrome may have a lower risk of developing Alzheimer’s disease11. Other studies have looked at the role of particular genes known to influence risk in the general population, but results are not always consistent across studies. Results regarding the potential influence of gender, hormones, and level of intellectual disability have also varied between studies.

 

However, much of what is known about dementia in the general population could also apply to those with Down syndrome. There is a considerable amount of evidence from the general population to support the protective effects of a healthy lifestyle. Research regarding people with Down syndrome is lacking but the World Health Organisation12 recommends that people with intellectual disabilities should focus on similar targets.

 

A healthy lifestyle aiming to reduce dementia risk would include good nutrition, regular exercise, and not smoking12-14. People (in the general population) who regularly do moderate-intensity exercise have a lower risk of dementia. They also have a higher brain volume in areas related to memory, planning, and learning.

The Mediterranean diet has also been found to reduce dementia risk in the general population as has staying socially active and engaging in stimulating activities for leisure, work, or education.13

One of the most important elements of a healthy lifestyle is preventative health care including regular medical check-ups. Good physical and mental health throughout life is associated with a lower dementia risk in the general population13.

People with intellectual disabilities often have undiagnosed or untreated health conditions which could be treated.

Sensory problems and physical disabilities can also compound their health and quality of life.

In the general population, cardiovascular disease is a particularly important risk factor for dementia15.

In general, people with Down syndrome have an overall lower risk of cardiovascular disease than the general population. However, it is reasonable to assume that for those people with Down syndrome who do have risk factors for cardiovascular disease, these factors would increase the risk of dementia. Such risk factors include a family history of heart disease and stroke, having diabetes, low levels of physical activity, a diet high in saturated fats, and smoking16.

 

Obstructive sleep apnoea is also known to increase the risk of dementia in the general population and it is very common in people with Down syndrome. It is possible that this could be an important additional risk factor for people with Down syndrome15. Medical management of obstructive sleep apnoea is based on an individual sleep study.

 

How can families identify the early stages of dementia and differentiate those from mental illness or other problems?

 

Diagnosing dementia in people with Down syndrome can be difficult. The standard tools for assessing cognitive function in the general population are not suitable when someone has an intellectual disability.

What is needed is to compare the person’s functioning to what it was before symptoms began9, but the person’s typical level of function may not be well documented.

As a result, health professionals rely on information provided by family, carers and other people who know the person well, to help come to an accurate diagnosis6. So it is important for the people close to the person with Down syndrome to know the early signs of dementia and to consult a doctor about any changes observed or any other concerns.

The earliest noticeable signs in people with Down syndrome may be behavioural or personality changes. If a person with Down syndrome consults a doctor when these changes are observed, then memory and other cognitive testing can be carried out at regular intervals to help to determine if decline is also occurring5.

 

There are tools available such as the Early Detection Screen for Dementia recommended by the National Task Group in the US. This is a tool that can help you to track your loved one’s skills and any changes in their functioning time. At present, the tool does not provide a cut-off score: rather, it is designed to facilitate talking about any observed changes with a health professional.

 

While families and carers are critical to recognising changes in their loved one, consulting a doctor is essential to determining whether those changes might be dementia or something else. There are other conditions that may look the same as dementia, many of which can be tested for and treated.

 

What can parents/carers do to prepare for the management of dementia in their loved ones?

If your loved one develops dementia, the keys to supporting them will be early planning and working well with their doctor and other professionals. So encourage your loved-one to find an attentive doctor they feel comfortable with, and to continue to see that doctor for annual health checks.

Early planning for any transitions begins with getting a diagnosis as early as possible. A baseline assessment of their skills when healthy is helpful. Use the free screening tool, and, if resources permit, arrange an assessment with a psychologist or psychiatrist.

Current recommendations are that people with Down syndrome have a cognitive assessment around age 30, to establish their normal level of functioning before declines begin and again at age 4017. But if they start to show declines, the assessment could be repeated annually5.

 

Build as much of a support network as possible around the person with Down syndrome. If dementia is diagnosed, talk with the person with Down syndrome about who is in their life and who they would like to invite to be involved in their care. Wherever possible, include the person as early as possible in the planning process. This may include discussions of end-of-life care18.

Support your loved one to understand their diagnosis so that they may participate in this planning. An easy-read fact sheet with pictures can help (see the resources links below). Find out what your loved one’s preferences are regarding care options, end-of-life planning, and what is important to them for their care18.

Families can facilitate holding onto items, such as photos and holiday souvenirs, which may one day serve a purpose in a memory box or life story. These are tools which can assist someone with dementia who is beginning to lose their memory. They can also aid communication between a person with dementia and others, and may help paid workers to understand the person better18.

Look into available services. People with Down syndrome have the right to access mainstream health services and aged care services. Those with younger onset dementia (before the age of 65 years) can also access aged care services if they have a diagnosis or suspected dementia. The National Younger Onset Dementia Keyworker Program can be accessed before a formal diagnosis is made. Of course, people with Down syndrome and dementia also remain eligible for disability-related supports. A range of allied health professionals may be involved in the care of someone with intellectual disability and dementia to promote their wellbeing.

 

As dementia progresses, the care goal needs to shift from supporting independence towards providing care and eventually palliative care 19, 20. Many people with Down syndrome and dementia may want to remain where they are living and their families may want this too21. However, if and when their care requirements can no longer be met in their current place, options will include transfer an aged-care facility or another disability service. Long-term planning for such transitions is helpful.

 

Dr Liz Evans is a NHMRC-ARC Dementia Research Fellow and Tanya Duckworth is a research assistant with qualifications in psychology and cognitive neuroscience. They are from the Department of Developmental Disability Neuropsychiatry (3DN), within the School of Psychiatry at the University of New South Wales in Sydney.

Resources

An easy read factsheet is available from the Alzheimer’s Society (UK) here:
https://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1092

The screening tool recommended by the US National Task Group is available from this site: http://aadmd.org/ntg/screening

Alzheimer’s Australia has made a video about dementia in people with intellectual disability. It can be viewed here: www.dementia.org.au/videos/collections?playlist=IntellectualDisability

 

If you would like further information, or would like to talk to us about the SAge-ID study, please phone Tanya or Liz on (02) 9931 9160 or email us at [email protected]

 

 

References:

 

  1. Wilson, L., T. Annus, S. Zaman, and A. Holland, Understanding the process; links between Down Syndrome and dementia. Intellectual Disability and Dementia; Research into practice. London: Jessica Kingsley Publishers, 2014: p. 34-52.
  2. Sinai, A., T. Chan, and A. Strydom, The Epidemiology of Dementia in People with Intellectual Disabilities. Intellectual Disability and Dementia: Research into Practice, 2014: p. 24-33.
  3. Margallo‐Lana, M., P. Moore, D. Kay, R. Perry, B. Reid, T. Berney, and S.P. Tyrer, Fifteen‐year follow‐up of 92 hospitalized adults with Down’s syndrome: incidence of cognitive decline, its relationship to age and neuropathology. Journal of Intellectual Disability Research, 2007. 51(6): p. 463-477.
  4. McCarron, M., P. McCallion, E. Reilly, P. Dunne, R. Carroll, and N. Mulryan, A prospective 20-year longitudinal follow-up of dementia in persons with Down syndrome. J Intellect Disabil Res, 2017. 61(9): p. 843-852.
  5. Lautarescu, B.A., A.J. Holland, and S.H. Zaman, The Early Presentation of Dementia in People with Down Syndrome: a Systematic Review of Longitudinal Studies. Neuropsychol Rev, 2017. 27(1): p. 31-45.
  6. Nieuwenhuis-Mark, R.E., Diagnosing Alzheimer’s dementia in Down syndrome: problems and possible solutions. Res Dev Disabil, 2009. 30(5): p. 827-38.
  7. Castro, P., S. Zaman, and A. Holland, Alzheimer’s disease in people with Down’s syndrome: the prospects for and the challenges of developing preventative treatments. Journal of Neurology. 264(4): p. 804-813.
  8. Courtenay, K. and N. Eadie, Medication treatment of dementia in people with intellectual disabilities. Intellectual Disability and Dementia: Research into Practice, 2014: p. 62.
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