By Rebekah Williamson

PHAB is a little organisation with a big impact.

PHAB primarily provides social groups for people of all abilities, across Auckland. We are always looking for new ways to engage with our community.

We have been doing a Girls Day Out annually, but after talking to many families we came to realise that the day-to-day routines for our mothers and daughters often revolved around care, and we wanted to provide a day that was uniquely about their relationship: bonding, learning and being together.

 

The recent Mothers and Daughters Day started with a cooked breakfast at the PHAB building, all the families came together and before long we were in taxis and off to our main activity for the day: Aerial circus for the day at the Dust Palace.

Kathleen Derrick. Photos: Natasha H’ng

We chose the Dust Palace in particular because of the large and varied range of costumes that they had, as we wanted everyone to walk away with photographic memories from the day.

Dust Palace was amazingly professional, and provided just the right amount of support, exceptional safety and empowerment to allow the participants on the day to grow in confidence as they explored the apparatus.

After lunch everyone dressed in costumes and got their time in the limelight for their photoshoots with their photographer Natasha H’ng.

Deborah and Faith Van Heeswyck

The afternoon was finished off at Kiwi Nails and Spa in Takapuna and cake and drinks.

We were lucky to have support from the Louisa and Patrick Emmett Murphy foundation, who saw the value in providing this special day and supported us to do so.

We are grateful to everyone who made this day happen. We are especially grateful to the Mothers and Daughters who were simply inspirational.

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.

 

 

In this edition of our regional focus segment, President Glen Jelley from the Otago Down Syndrome Association shares what they have been up to in Highlanders country.

My name is Glen Jelley and I am the current president and regional representative for the Otago Down Syndrome Association.

First, I would like to give you a bit of background on how the ODSA came to be.

Before the current ODSA there was an Otago Down Syndrome Association that had stopped operating before we became part of the Down syndrome community, but I understand they did a lot of amazing work around the Otago area.

On the 20th of August 2008 we were blessed with the birth of our beautiful daughter Jessica who has Down syndrome.

We knew before she was born there was a high chance of her having Down syndrome so had done a bit of research and soon after Jessica was born joined the New Zealand Down Syndrome Association and Upside of Downs.

When Jessica was around 7 months old, we were introduced to Karola and Graeme Franklyn with daughter Emily and Victoria Murgatroyd with her son Isaac. Karola, Graeme and Victoria went on to become three of the founders of the new ODSA in 2010.

We joined a few years after Karola and Graeme Franklyn, Victoria Murgatroyd, Jean Elmes and Karen MacDiarmid had started a social group that later formally became the Otago Down Syndrome Association.

Karola was the president, Graeme the treasurer and Jean the secretary. There was a lot of work put in in the early years to get the ODSA off the ground and build the membership to where it is today at around 75 families. The ODSA covers a large area from south Otago (Balclutha) to North Otago (Oamaru) and up to Central Otago (Queenstown, Wānaka, Alexandra).

There have been some awesome social activities in the early years with Halloween parties, ten-pin bowling, outdoor parties with the Highlanders visiting as well as fire engines and lots of great memories and friendships were made.

Karola was our president for around 5 years. As a professional teacher she was deeply passionate about education for our children (and all children) and spent a lot of her time researching and presenting seminars around adapting the curriculum and better learning practices for our children. There were often emails that would arrive at midnight from Karola (I swear she never slept). The ODSA are deeply in-debted to the work put in by the committee in the early years as we certainly would not be where we are now without them.

Jett Dawson a Balclutha local.

If I got my years right, I joined the committee at the AGM in 2014. At that time, we were focusing on monthly social events and running three to four seminars around education a year.

Around this time there were a lot of younger families and we had a lot of fun at our monthly social gatherings. As the children of the families got older the social gatherings became less as the now teenage youth moved onto likes of the UPP club, which was originally formed in Christchurch and is more focused on social and life skills.

There were not a lot of younger families coming through the ranks, so the decision was made to cut back on the social gatherings to one each quarter.

In 2015 Karola and Graeme made the decision to step down from the ODSA committee and I was elected president.

Isaac Murgatroyd-Mcnoe skiing.

The current committee consists of myself as president, Karl Walker as Treasurer, Jean Elmes as Secretary, Victoria Murgatroyd for Media, Lisa Gallacher for Education, Catriona McKee and Carlo Biggemann self-advocate.

We were lucky to get Lisa Gallacher on the committee in 2017 who is a private speech language therapist and is extremely passionate about speech/language and education for children with Down syndrome.

In 2018, we ran our first “Better learning Together Conference” in Dunedin where a range of professionals presented at our first one-day conference.

We would like to thank the Auckland Down Syndrome Association for having us at their conference to see how it was run to give us ideas for ours.

Our conference has gone from strength to strength over the last three years with on average 50 teachers, TAs, RTLBs, parents and caregivers attending each year from all over the greater Otago region.

Grace Moreton dressed up for her nana’s 80th.

We have a range of presenters presenting on topics such as numeracy, behaviour, sensory processing, social skills and speech and language.

We are excited with the direction we are heading with the ODSA and the conference. We develop it further each year going off the feedback from the year before.

This year we were extremely fortunate to have Grace Moreton, Katie Beamish and Beau Campbell who are all youths with Down syndrome as keynote speakers at our conference.

It was an immensely proud moment for the parents of the youths but also the ODSA.

We currently hold three to four socials per year concentrating mainly on education.

We hold a social on World Down Syndrome Day, one around Christmas and one or two in between.

We have done a lot of fun things over the last 10 years, such as the Taieri Gorge train trip, Highlands motorsport park visit, Wānaka visit, Dunedin museum and much more.

It’s been crazy times lately with Covid-19 and our last two social gatherings had to be cancelled.

In my position as ODSA regional representative I have had a few phone calls over lockdown asking for advice around resources for education and what we are allowed to use our respite days for and such things.

Generally, the families I spoke to over lockdown were coping well under the circumstances. I did have a couple of families comment that their children suffered from a bit of anxiety when it came time to go back to school.

In my role as Otago regional rep I have had the opportunity over the last five years to attend the NZDSA Youth Camp in Auckland in November each year.

The first year I attended as a support person and each year since I have been fortunate to take a youth from Otago to the camp. It is a great opportunity for the youth to attend these weekend camps. They are a fun weekend building confidence, new friendships and skills.

I am excited for the future of the Otago Down Syndrome Association and for people with Down syndrome.

We have an awesome website www.odsa.org.nz and our freephone number is 0800 682 463. Please check us out.

Families with a child with Down syndrome in many cases face a lifetime of navigating Government departments and agencies to receive the support they need and are entitled to. COEN LAMMERS makes an attempt to point you in the right direction.

Dealing with the Ministry of Health (MoH), Ministry of Social Development (MSD), Ministry of Education (MoE), and their off-shoots can be difficult, frustrating, infuriating or even traumatic.

Having a child with a disability creates additional pressures on families, but those organisations and officials that are supposed to support your family dealing with unorthodox circumstances often only add to the stress levels.

Social media groups are overflowing with endless horrific examples of parents having to fight for what they are entitled to.

Many dread the face-to-face encounters with officials at WINZ to talk about benefits, or MoE staff when fighting for teacher aide funding in Individual Education Plan (IEP) meetings.

Many simply give up and forfeit what they are entitled to and sometimes desperately need.

Trish Grant is an experienced advocate for IHC and has seen every scenario of this state-inflicted trauma first-hand.

“Families are dealing with a complex maze of entitlements,” says Grant, whose organisation is working on a new digital tool to help families navigate the different departments and entitlements.

“At the moment it is impossible for any family to find their way with the information available from the Ministry of Health, MSD or any other Government department.”

Grant says that the system is even difficult for those who are dealing with it on a daily basis.

“One pediatrician once put up a slide at a conference to show the pathways to funding and services, but you’d have to study it for hours to make sense of it. It was the most bizarre slide.”

The IHC advocate also recalls a recent court hearing to secure a Family Carers Benefit, in which the attending magistrate described “the Ministry of Health funding policy as impenetrable”.

So if you think you are struggling to make sense of it all, you are not alone.

“It is still a maze for people to get through, especially for new parents.”

Grant says that most parents find out what they can get through word of mouth.

“That’s why groups like the NZDSA are so important where parents can share information with other parents to find out about financial support or what is on offer as far as support services,” says Grant.

Thankfully, Government agencies are recognising that they need to make accessing supports easier for disabled people and their families, and the primary examples of this is Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives (EGL) approach.

Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives approach provide disabled people and their whānau with more choice and control in their lives, offer more flexibility and provide more opportunities to make decisions about how to use the funding to suit the needs of the disabled person and their family.

EGL started in 2011 as a partnership between the disability sector and agencies aimed at long-term transformation of how disabled people and families are supported to live everyday lives.

EGL aim is to create a life plan for its participants and through a navigator applies for the necessary funding through different agencies to create a single funding pool to fulfil the life plan for the person with the disability.

The Ministry of Health allows people to receive Individualised Funding to buy in services they require, but that only covers MoH traditional supports like Personal Care or Household Management, Respite Services and Carer Support.

Enhanced Individualised Funding enables people to pay for a wider range of disability supports that have not traditionally been available and this allows for more flexibility and greater control of how you use your disability support budget.

In 2017, a group of government ministers involved in the disability sector approved a new over-arching programme to Transform the Disability Sector, The new system, Mana Whaikaha, a prototype in Midcentral was co-designed with disabled people and whānau, and others in the disability sector. It is based on the Enabling Good Lives vision and principles.

The interest in the Mana Whaikaha programme has been overwhelming and will provide invaluable information for the Government to implement a nationwide transformation.

Until that new system is established, here are the key funding streams families need to be aware of.

MSD and WINZ benefits

The Ministry of Social Development offers two global benefits and all families are entitled to the Child Disability Allowance.

This allowance is for carers of children with a disability under 16 and is currently $49.25 a week. Officially, this allowance is reviewed every year, but no longer required for children with Down syndrome, so make sure you remind the person who may still want to assess your case, especially when they start asking silly questions like “does your child still have DS?”, which has happened to many families.

IHC advocate Trish Grant says that the number of parents receiving the Child Disability allowance is decreasing.

“Many parents don’t know it even exists so I think there is a big issue there.”

Once your child turns 16, your child is entitled to the Supported Living Allowance, if the child is cared for full-time or would otherwise need residential care (or the equivalent).

Currently the benefit rate is $253 if your child is 16 or 17 and increases to $307 when they turn 18.

Your child can still have a part-time job but once they earn more than $115 a week, the benefit will start getting deducted.

On top of these benefits, you can apply for a Disability Allowance of up to $65 a week, which is for expenses your child may incur due to their disability. This includes medical appointments, travel costs, prescription fees or heating.

You will need to get your GP to confirm these needs and keep your receipts, so this benefit can be a hassle for the relatively small amount and many families choose not to go through the process.

Depending on your living situation, these benefits can also get topped up with an Accommodation Supplement, which ranges from $50 to $120 a week. If the person with the disability owns their own property you can also contact your local council for a Rates Rebate. You can visit the Department of Internal Affairs’ (DIA) website for more details.

Aside from these allowances, MSD can also provide you with a Community Services Card which provides multiple benefits and savings when paying for the bus, pool or other services.

Finally, MSD has the ability to provide one-off payments to provide assistance in particular hardship situations.

Like other children without a disability, children with Down syndrome also qualify for the standard Childcare Subsidy, or OSCAR subsidy for after school and holiday programmes.

It is also important to make sure your family gets their full entitlements under the Working For Families tax scheme.

Ministry of Health benefits

The Ministry of Health also offers a list of support options, but again, they are not easy to access or to understand.

The level of support is determined by an assessment carried out by your local Needs Assessment and Coordination Service (NASC) which is different in each region. You can find your local service under the Respite Care section on the Ministry of Health website.

The MoH offers Carer Support, which enables you to pay a support person to look after your child while you can take time out for yourself.

The Respite Support allowance is also aimed to give parents a breather, but in this case, the allowance pays for your child to go somewhere for an activity or pay a support worker to take your child to an activity.

The level of these benefits are determined in your NASC assessment and depend on your personal situation, like how many other children you care for, how old your children are and other issues that create additional stress in your household.

Sadly, it does not pay to put up a brave face, because if you tell your assessor that everything is peachy, you will receive little support, whilst describing your worst day will get you more support.

A major breakthrough in legislation in 2020 now makes parents or siblings of children with Down syndrome over 18 eligible for Family Funded Care.

This change has been created to facilitate disabled people who want to employ and eligible family/whānau member to provide some or all of their supports.

Currently, the hourly rate for Ministry-funded family carers is $20.50 per hour, which increases to $25.50 an hour if you have been caring for your family member for more than 12 years after they turn 18. Parents and siblings from 16 years onwards are eligible to become the carer.

The Ministry of Health also provides additional benefits, but they are not easy to locate or access.

Most families are eligible to have costs for glasses, fully or partially funded, through the Spectacle Subsidy for children under 15. This covers lenses, frames (and repairs!), examinations and eye patches.

You may also get some funding for dental work and other health needs, but you need to talk to your NASC, your pediatrician or GP to find out exactly what your funding covers.

If you need to travel for treatments regularly or long distances, you also need to ask for the National Travel Assistance Scheme.

The Ministry of Health can also make equipment available through their providers. Accessable and Enable NZ. This could include adjustable beds, shower stools or communications devices.

For those families who need some more assistance getting their children ready for school or when they transition to their own home, the Ministry of Health also offers the Home and Community Services.

For younger children this could consist of someone providing support with meals, showering or getting dressed.

For young adults with Down syndrome who start to live independently, this service supports this transition by helping out with cooking, laundry and cleaning.

Ministry of Education

Those of you who have or had children at school will be well aware of the Ongoing Resourcing Scheme, better known as ORS funding for students with High Needs and Very High Needs.

To access ORS you will need to complete an ORS application. It is important to remember that the application process is emotionally challenging because instead of celebrating and focusing on the achievements and strengths of the student, it requires you to look through a deficits lens to ensure that your child is well resourced.

The ORS application has nine criteria and requires you to identify your child’s need for learning support across five areas: learning, hearing, vision, physical, or language use and social communication.

Parents say it helps if you recognise that by accurately reflecting your child’s learning support needs it will clarify whether they meet the eligibility criteria for ORS. The ORS application will be submitted to a team of verifiers who follow a verification process. At least three verifiers, working from separate locations, independently consider each application. Once the verifiers make a decision, a letter is sent to the parents/whānau and the early intervention centre or school. Resources for students in the Ongoing Resourcing Scheme may include specialists, additional teachers, teacher aides, and a grant for consumables.

If the Local Ministry of Education is the fund holder, then a portion of the funding will be used for the battalion of specialists like speech, occupational and physio therapist and others employed by the Ministry. However, many parents feel that the specialist focus is on writing reports and making recommendations for teachers on how to work with their child rather than providing what they desperately want, which is one-on-one therapy.

Another very important component of ongoing resourcing is to ensure that your child has a current and well-designed Individual Education Plan (IEP) as ongoing resources will be allocated based on individual needs identified through the IEP process. It is essential that you as a parent are involved alongside the educators and professionals with developing the IEP. The NZDSA recognises for families each step of the ORS process is brutal and at times heart-breaking as there is never enough funding available.

The level of ORS funding depends on criteria across the learning support areas and will include things like how independent your child is, whether they have multiple health challenges, whether they are toilet trained and whether they tend to run away.

For this last challenge the Ministry, thankfully, has a separate Property fund they can call on to create a safety fence around the school if required.

Parents tell us that they are frustrated as they feel the ORS funding is not always transparent and not always fully dedicated to the child who receives the funding. Some schools, with genuine motives, pool the ORS funding to provide learning support for as many students as they can, including those who did not receive any funding. So it may pay to ask to get some clarity on how your funding is used.

Many deserving children struggle to get ORS funding so children with Down syndrome are fortunate as they should qualify as high needs students. It is worth noting that the review process for ORS funding can be used when an application for ORS is declined, or when a student receiving ORS funding has a significant change in their circumstances.

Getting your children to and from school can be a logistical or safety challenge so make sure you also look into School Transport Assistance, or you may be eligible for a taxi through the Total Mobility Scheme.

To find out more about ORS go to https://www.education.govt.nz/school/student-support/special-education/ors/

 

Funding through other charities

As the state funding only goes so far, numerous charities and trusts have jumped into the breach to help families at different stages of life.

To get a good idea of what is available in your region, refer to the website www.Firstport.co.nz which lists all the support services and funding agencies available in New Zealand.

One extremely successful charity is the Upsidedowns Education Trust which provides funding for speech therapy for children with Down syndrome, which is a vital asset to every child but often difficult or expensive to access through other channels.

If you child is keen on sport, it is also worthwhile to get in touch with the Halberg Trust who provide equipment and coaching for disabled New Zealanders to get involved in sport.

The Halberg Trust has helped many children fund a trike to enable them to bike with their families or their peers, but you can also try to funding for a trike through the Variety Children’s Charity.

Each region has dozens of philanthropic organisations that are keen to support families for individual needs or group activities, so make sure you have a good look around and see what’s available.

Most importantly, do not be shy or modest to ask and gratefully accept all the help you can get for your family.

 

 

 

 

The STRIVE self-advocacy team had another busy year and even the  lockdown could not stop their work.

STRIVE is a team of people with Down Syndrome who are a members advisory and leadership group who advise and support the New Zealand Down Syndrome Association board, and are ambassadors and advocates for people with Down Syndrome.

Judging by the STRIVE report to the AGM recently, the STRIVE team has developed its skills and influence significantly during 2019-2020.

The team regularly meets for Funshop, which are workshops with different topics, where guest speakers share their expertise with the young ambassadors.

The past year, the meetings covered Research, Advocacy, Writing Reports, Tips for Public Speaking and developing a Succession Plan.

This final subject is particularly important as some of the STRIVE team have been in their role for several years, and may want a change, while it is also important to get new people involved with fresh energy and ideas.

Once Covid 19 started affecting our day to day lives and New Zealand went into lockdown, the STRIVE team started using Zoom meetings.

The group got together on eight occasions between April and June to share their Covid 19 experiences and continue their other work.

Aside from sharing ideas with each other, the group has been very active in the wider community on behalf of the NZDSA.

Andrew Oswin attended the Disability Consumer Consortium in Wellington, Edward Borkin presented to Auckland Timber Industry as well as the Auckland Success in Schools workshops, Erin Smith was a Support Buddy on the Youth Development Camp and Andrew presented at a meeting of Down Syndrome Australia.

The group worked with the Health And Disability Commission on the script for digital resources to help people with disabilities, in which Duncan Armstrong featured as the lead actor.

On the international stage, STRIVE was part of the a feedback group for the Down Syndrome International research on Covid 19, as well being part of a disabled person-led monitoring programme  in Health and Wellbeing by the Donald Beasley Institute.

The STRIVE members have made huge progress as a group but are also proud of the successes they have enjoyed individually.

“On the 13th October 2020 I received and Achievement Award for the outstanding artistic achievement from Arts Access Aotearoa,” said Duncan Armstrong.

“I am taking up a leadership role in the kapa haka group in Invercargill and will be performing alongside other people with Down syndrome from the Invercargill Down Syndrome Group,” said Alexandra Hewitt.

Edward Borkin said will be going flatting which is a goal he has had before he even joined STRIVE, while Caroline Quick is a member of the EGL regional leadership group in Christchurch as one of three disabled representatives.

Caroline is also a member of the Disability Advisory Group for the Christchurch City Council, for which she is paid  a meeting fee.

In the far north,  Erin Smith is a youth leader in the Great Mates Social group.

“I am still a member of the Northlands DSA committee and I continue to enjoy my dance classes.  I have done training workshops at work and I am helping with the induction training at work and doing meet and greets,” says Erin.

Andrew Oswin said he really enjoys being a self-advocate and a member of STRIVE.

“I am happy and privileged and to have made a commitment of service to the Down syndrome community and country of New Zealand.”

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.

 

By John Pike
Where do you work?
Right here at Slaughterhaus – the graphic design company where CHAT 21 is produced.

John on cleaning duties at Lighthouse Brewery

How long have you worked here?
11 months.
How many hours each week?
6 hours.
What jobs do you do at your work?
I do the cleaning in the design studio and in Lighthouse Brewery next door.

John with his boss Dan and colleague Taylor.

How does it make you feel that you have a job?

It makes me feel good.

What do you like the most about your work?
Having a beer at Lighthouse Brewery after work on Friday and getting paid.
What don’t you really like about your work?
Cleaning the floor.
Do you have any other paid or volunteer jobs as well?
I help in the garden at Hohepa.
What would be your dream job?
Beer taster.

Down Syndrome International recently hosted a webinar to provide information and receive feedback about the first international guidelines for educating learners with Down syndrome.

If you missed the webinar but are interested in learning more, you can watch the webinar here.

Down Syndrome International (DSi) has developed these guidelines, using experts and existing research from around the world, to enable teachers to help their students with Down syndrome reach their full potential.

NZDSA National Executive Zandra Vaccarino thinks these guidelines are a game changer and will become an invaluable asset to New Zealand educators.

“We know that educators in New Zealand will welcome this resource as there is a great need for expert guidelines to  teach students with Down syndrome,” says Mrs Vaccarino.

“These new global guidelines have pulled together the best practices available around the world and will facilitate the realisation of the right of people with Down syndrome to an inclusive education and lifelong learning.”

New Zealander Bridget Snedden, Vice Chairperson of DSi says these guidelines have been developed to improve the availability and quality of education for people with Down syndrome around the world.

“We need to raise the expectations among educators of what young people with Down syndrome are capable of,” says Snedden who was closely involved in developing the guidelines.

To download the guidelines, please go to:

https://www.ds-int.org/Handlers/Download.ashx?IDMF=7a4a9546-287d-49c1-8573-888319d7310f 

Some people can’t wear a face mask or covering because of a disability.

The NZDSA have designed these cards to help you in public situations.

The first side of the card is always the same and some people will be happy using it on its own.

Show it to quickly explain that you have a legal reasonable excuse not to wear a face mask.

If you want a non-verbal way to explain more you can double side your card with one of the extra messages. These can be printed or kept on your phone as photos.

YOU CAN PRINT THEM ALL OFF HERE.

 

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.
  9. Torr, J., Dementias, in Psychiatric and Behavioural Disorders in Intellectual and Developmental Disabilities C. Hemmings and N. Bouras, Editors. 2016, Cambridge Univrsity Press: Cambridge, UK.
  10. Ballard, C., W. Mobley, J. Hardy, G. Williams, and A. Corbett, Dementia in Down’s syndrome. The Lancet Neurology, 2016. 15(6): p. 622-636.
  11. Schupf, N. and G.H. Sergievsky, Genetic and host factors for dementia in Down’s syndrome. The British Journal of Psychiatry, 2002. 180(5): p. 405-410.
  12. World Health Organization, Ageing and Intellectual Disabilities – Improving Longevity and Promoting Healthy Ageing: Summative Report. 2000, World Health Organization: Geneva, Switzerland.
  13. Reppermund, S. and J.N. Trollor, Successful ageing for people with an intellectual disability. Curr Opin Psychiatry, 2016. 29(2): p. 149-54.
  14. Sisirak, J. and B. Marks, Health and wellness strand: recommendations from National Goals Conference 2015. Inclusion, 2015. 3(4): p. 232-249.
  15. Wilcock, D.M., F.A. Schmitt, and E. Head, Cerebrovascular contributions to aging and Alzheimer’s disease in Down syndrome. Biochimica et Biophysica Acta (BBA)-Molecular Basis of Disease, 2016. 1862(5): p. 909-914.
  16. Trollor, J., C. Salomon, J. Curtis, A. Watkins, S. Rosenbaum, K. Samaras, and P.B. Ward, Positive cardiometabolic health for adults with intellectual disability: an early intervention framework. Australian Journal of Primary Health, 2016. 22(4): p. 288-293.
  17. Dodd, K., S. Coles, T. Finnamore, T. Holland, S.K. Gangadharam, M. Scheepers, . . . S. Wilson Dementia and people with intellectual disabilities: Guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia 2015.
  18. Towers, C. and H. Wilkinson, Planning ahead: Supporting families to shape the future after a diagnosis of dementia. Intellectual Disability and Dementia: Research into Practice, 2014: p. 161-182.
  19. Carling-Jenkins, R. and C. Bigby. Supporting people with intellectual disability and dementia: A training and resource guide PowerPoint presentation for managers of disability organisations.; Available from: http://www.karingal.org.au/media/529677/day_one_-_dsws_-_karingal_theme.pdf.
  20. Jokinen, N., M.P. Janicki, S.M. Keller, P. McCallion, and L.T. Force, Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Journal of Policy and Practice in Intellectual Disabilities, 2013. 10(1): p. 1-24.
  21. Carling-Jenkins, R., C. Bigby, and T. Iacono, Family experiences of supporting a person with Down syndrome and dementia in Australia. Intellectual Disability and Dementia: Research into Practice, 2014: p. 145-60.