Mythbusting guide to Down’s syndrome and dementia

Guest blogger, Dr Karen Watchman, explores the myths surrounding Down's syndrome and dementia.

People with Down’s syndrome are at an increased risk of dementia.

Dr Karen Watchman is a researcher, based at the University of Stirling, who specialises in understanding how to help people with learning disabilities to manage their dementia.

Dr Watchman discussed myths around Down’s syndrome and how research can help people with both Down’s Syndrome and dementia. Read her thoughts belo

Common myths about Down's syndrome

Couple with Down's syndrome at a cafe

What do you see when you look at this picture?

Do you see a young couple enjoying a meal? 

Do you see the difficulties at mealtimes when one partner has a diagnosis of dementia?

Or do you only see two people with Down’s syndrome or a learning disability?

People with dementia experience stigma and discrimination. Choices made are not always their own.  People with dementia can experience low self-esteem, fewer aspirations for the future, more problems accessing healthcare.

Now read the above paragraph again and substitute ‘people with dementia’ for ‘people with Down’s syndrome’.  

The difference is that for people with Down’s syndrome this is the reality even before a diagnosis of dementia.

How can we best support a population for whom standard dementia assessments and tests are not suitable? When due to their pre-existing learning disability, they may not understand their diagnosis of dementia? And who already experience discrimination and health inequality?

Let’s dispel some myths about Down’s syndrome.

Myth 1: People with Down’s syndrome rarely live beyond middle age

In 1983, life expectancy for people with Down’s syndrome was around 25 years. Now many people live beyond the age of 60. 

A consequence of this is that more people are now living to an age where they are likely to develop dementia. But what does this mean for families?

Longer life expectancy in people with Down’s syndrome is to be celebrated, but the implication for many older parents is that their (adult) child will outlive them – this was not what parents will have been told when their child was born and consequently many have not planned for this eventuality.

Myth 2: All people with Down’s syndrome will develop dementia

Although most people with Down’s syndrome will experience brain changes as they age, not everyone will develop Alzheimer’s disease or another type of dementia.

Whilst having Down’s syndrome does put a person at increased risk (estimated at 1in 3 people in their 50s, and closer to 2 in 3 aged over 60) it is not inevitable for all.

Myth 3: The diagnosis of dementia should be kept from people with Down’s syndrome to avoid upsetting them and because they wouldn’t understand anyway

Just as with all of us, people with Down’s syndrome will typically know when something is wrong. However, we are less likely to talk about the diagnosis with someone we think may not understand.

It is important to remember that the words we use to talk about being ill are pitched so that they are understood and have meaning for each individual – this may, or may not, include the word dementia in the conversation.

Myth 4: People with Down’s syndrome will not have a supportive partner

Increasingly people with Down’s syndrome are married or in long-term relationships.  

It is important to respect this in the same way as if neither partner had a learning disability.

The partner of a person with Down’s syndrome and dementia needs support in their own right, rather than as part of the same support arrangement or package of care.

Couple with Down's syndrome smelling flowers

Myth 5: People with Down’s syndrome do not respond to the same non-drug treatments (including social and environmental interventions) as everyone else who has dementia

This is not so straightforward. We are seeing more research and hearing anecdotal evidence that non-drug interventions such as music, reminiscence, and technology are effective in supporting people with dementia.

However, the studies that have taken place did not include people with Down’s syndrome.

Individuals with dementia can live well, develop new relationships and maintain existing ones.

Understanding life history and previous experience can help us to know the ambitions and preferences of the individual with dementia, and to introduce meaningful strategies and programmes that contribute to a sense of wellbeing.

Now read the above paragraph again and substitute ‘individual with dementia’ for ‘individual with Down’s syndrome and dementia’.

Until we see beyond the label of Down’s syndrome and respond appropriately to both age - and dementia-related changes in each individual, we will continue to struggle to know how best to support people with Down’s syndrome after a diagnosis of dementia.

This is why I have an Implementation Grant from the Alzheimer’s Society, Life Through a Lens.

Along with Dr Kate Mattheys and co-researchers who have a learning disability, we test non-drug therapies to support people with a learning disability who have developed dementia.

The therapies are meaningful to the person and may include music, reminiscence, environmental adaptation or technology.

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My 36 year old daughter who is down syndrome was diagnosed with alzheimers and began to dive into an abyss rapidly. She was eventually given 6 months to live. Three months later in hospice she began to recover. She is now functioning better than before her diagnosis...we are all thrilled but confused about what happened to her. While in her dark place she became non verbal, couldn't walk or balance, started severe tremors in her legs and feet, had visual hallucination that terrified her. Any thoughts??

Hi there Cheryl, thanks for your comment.

It sounds like you might benefit from talking with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or you can create an account to reply and connect with others who may have been through a similar situation: https://forum.alzheimers.org.uk/

You can also speak with one of our Dementia Advisers by calling our Dementia Connect support line on 0333 150 3456. Find more information about the support line, including opening times, here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this is helpful for now.

Alzheimer's Society blog team

My daughter lives in a group home. Staff is saying she gets confused, and think she has onset Alzheimer's. I am not sure that is the problem. She works at two jobs and does many extra curricular activities plus having a lot of of staff changes all at one time. I am looking for a doctor/neurologist who treats downs syndrome regularly and knows something about Alzheimer's.

Hi Joan, I'm sorry to hear about your daughter. If you would like to phone our Dementia Connect support line on 0333 150 3456 one of our advisers will be able to provide advice and support.

More details of the support line (including opening hours) can be found here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

I hope that is helpful,

Alzheimer's Society blog team

I care for my 67 year old sister (Sissy) with DS. She was diagnosed with dementia about a year ago. She is the oldest of 6 children. She is declining quickly. She no longer remembers anyone. It is sad because the things she used to love she is no longer interested in. She used to go camping with us, my husband would take her on motorcycle rides, she flew with him in his ultraIight plane, she loved to swim and now she just seems to be miserable. We have 7 grandchildren and she used to adore being around them, now she can’t stand for them to come over. She broke her femur a Couple of years ago and never complained about any pain, she just had a limp. Just 8 weeks ago she slipped on the wood floor (she was dragging her blanket and stepped on it) and broke her ankle in three places. She had to have surgery and is now wearing a cast. Her pain tolerance is off the chart. None of our siblings help with her at all. Only one of them stops by about every other month to see her. She is completely dependent on me for everything. I hope I can keep her with me until the Lord takes her home, but this has to be the hardest thing I have ever done. My husband is a blessing and tries to help, but this has been hard on our marriage as well. I guess we just need a break. We have had her about 15 months with no break of any kind, not even an overnight stay. Just pray that I will be able to keep her with me. I love her so much!

Hi Serena, I also have a sister who is 59 who is in stage 6 of her demtia. She was in a group home and is currently in a long term facility. We were contacted by Hospice, who apparently are not just an end care giver. They were able to establish my sister, assist with medications to help her with anxiety. They monitor her a few days a week and provide other care. They also offer a respite care where my sister her caregivers can have a "break". I have been fortunate that my sister was in a program for over 40 years but they do not offer the further medical care that my sister now requires. Hospice is still very much involved with her care as well as my care. We as the primary guardians need to care for ourselves, which we usually don't. I would definitely suggest contact your local program, we have Samaritan here in NJ and they are wonderful. They will be with us every step along the way. I will be in prayer for you, your husband & Sissy.
With much lover,
Stephanie

I care for my 58 year old sister who has Down Syndrome and a diagnosis of dementia. She suffers from seizures as well. My parents are both deceased but my sister seems to be grieving more strongly than when they actually died. My father passed 9 years ago and my mother 2. I wonder if I should try to find a way to help her understand that they are gone or should I go along with what my sister is believing.

Hi Jeannine,

Really sorry to hear that your sister has been grieving strongly. This can be particularly difficult for somebody living with dementia, and the best way to deal with it can vary from person to person.

We have some information on our website about supporting a person with dementia through bereavement, which you may find useful: https://www.alzheimers.org.uk/get-support/help-dementia-care/supporting…

The advice here is general, but you can also phone our Dementia Connect support line on 0333 150 3456 for tailored information, advice and support. More details of the support line (including opening hours) can be found here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope this is helpful,

Alzheimer's Society blog team

My uncle had D.S. Born in 1938,he was looked after by our family all his life till he died aged 62. He needed everything doing for him-toileting,feeding, washing. He could not speak,and that was the biggest problem as we didn't know if /when /where he was in pain.His habits began to change within 6-12 months of his death,and we didn't even consider it might be dementia.(He'd always twiddled a teaspoon and used it to feel vibrations -and even ask for stuff.Suddenly it was discarded. He went towards someone's bedroom instead of the lounge on getting up in the morning )We got a wheelchair and carried on as normal.In the end,he wouldn't get out of bed and he got pneumonia.It was a week or so later when he died ,peacefully.It wasn't significantly more work looking after him but he would have been very scared not being at home.He had few meds in his lifetime,a much lower dose than most people but they worked.We're in Wales,in the UK so we don't pay for anything anyway.He went to hospital once in his life and coped well with my aunty staying with him in a room to himself.He'd fallen off the toilet and hit his head.Everyone was so kind.No -one mentioned dementia/alzheimers but that may have been the start of it,We just don't know.Living with D.S. in the family gave me a unique insight from when I was little.I have a lot to thank him for.

Downs Syndrome people need their own clinics or someone who specializes in their diagnosis. I spoke with a gentleman from Community Living Services and he was against it, Then I learned about the larger ventricles. Ohio has a clinic for Downs if you can get there.

I also think that if there are hip or knee problems, your Down’s syndrome family member will not get knee surgery or hip surgery. I took my sister to U of M Dental and at that time did not know she was entitled to 2 crowns through Medicaid, she chewed on those two teeth, her caregiver before me was just tired I guess, anyhow, the dentist pulled them. I had to grind her food after that, ground up food mostly does not taste that good. Oh and the drugs they had her on, horrible, she was an experiment to them, i said no to many, I told a neurologist she was crying and I thought she was in pain, he wanted to prescribe meds for pseudo bulbar effect, not sure if this is correct spelling. I said no.

I care for someone with demtia and downs syndrome at home, they need 24 hour support in all aspects of their life, and uses a wheelchair now, as well as having aids in our home, they have had a diagnosis of epilepsy and dementia, just wish there was an online support group I could find,

Hi Donna,

Thanks for getting in touch - that sounds really difficult.

Have you seen our online community, Talking Point? People affected by dementia share a wide range of experiences there, so it's definitely worth taking a look if not. You can find it here: https://forum.alzheimers.org.uk/

We'd also encourage you to talk to our helpline if you'd like any information, advice or emotional support. You can find all the details here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope these things are helpful for you
--
Alzheimer's Society blog team

Hi Donna,
I'm late to this thread but are you still looking after your loved one and in need of a support group? We are in the exact same position and have found a really good facebook group. Thank you for sharing!

Hi…. Please can you tell me what the group is called on Facebook . I care full time for my mum who has vascular dementia and deteriorating weekly. My sister is Down syndrome and was diagnosed with advanced Alzheimer’s and since February started having up to 5/6 seizures a day. She’s only just been giving epilepsy tablets to try and help control her fits. I’m struggling with it all tbh. Because my mum forgets things instantly, she gets upset and doesn’t understand when my sister has a seizure and can’t maintain any information I tell her about my sister… I would just like some support and talk to people who are going through the same. Sorry for the long comment… J

Hi Jackie. I'm sorry to hear about your situation. We went through this with my brother, who passed this last February. He was 49. While this group is not a group of professionals, it is a group going through the exact same situation. And what my family found was sometimes we found more resources from others and their stories than we did doctors simply because there is so much unknown at this point with this disease and this demographic.
Wishing you the best - Facebook Group : Down Syndrome and Alzheimer's/Down Syndrome Regression Support. It is a private group so just ask to join.

What is the name of the support group?

I’ve just learnt today my son who has Down’s syndrome and is in supported living is to have (now he’s 30 ) a screening test for dementia and there is to be another at 35. My concern is why give him ANOTHER label and to what end is this screening for? Who will it benefit, him the NHS or social services. If he had a diagnosis of dementia does this mean losing his current care package and funding? I personally think he’s being discriminated against because of his learning disability. His siblings have never been offered a screening test. Again if they had what would be the consequences for a “ normal” person? You would need to inform insurances, DVLAetc etc. I just think it’s very intrusive and should be dealt with as and when nature says

As you may be aware, people with Down’s syndrome are more at risk of develop dementia, particularly as they grow older. This is predominantly due to Alzheimer’s disease, although less often they can develop other forms of dementia. The available anti-dementia medications seek to temporarily slow down or delay the progression of symptoms and early diagnosis does offer the opportunity for early treatment for those who develop the disease. Whilst anti-dementia medication may delay the progression of symptoms, adapting the social, emotional and physical environment of a person with dementia can often remove the need for additional medical intervention. So it may be helpful to know early on whether or not your son is developing dementia.

It is not possible to diagnose dementia from a simple assessment. It is also important not to assume that a person with a learning disability has dementia simply because they fall into a high-risk group. Dementia is often suspected by excluding other possible causes and assessing a person's performance over time. As people with Down’s syndrome are more at risk, regular assessments from age 30 help with this process.

His current care package is designed to meet his needs, and like anyone else if these needs change then additional care should follow. Drivers with dementia are required to be assessed as to their safety on the road, and many remain safe to drive until the effects of advancing dementia would risk a danger to themselves or others. Insurance companies require everyone to declare their medical status, and this may, or may not affect their premiums, depending on the policies of individual insurers.

Too young for that diagnosis, look for everything but that, please read my other posts. I was I court for guardianship and the judge said that sexual predators now see a population that they can easily take advantage of and it makes her sick. One time while waiting for a meeting at my sisters workshop I heard the social worker screaming at a worker for a good 25 minutes. Whenever I asked to observe my sister in the workshop setting, they would discourage me, my presence would cause a disturbance, watching from a second floor railing, I insisted, that was when I heard how loud it was. Workers were dumping finished parts into a huge plastic bin. Each time, my sister and those around her would jump. When I expressed my concern, the screaming social worker said it didn’t happen all the time, didn’t believe that but wasn’t sure how to handle the situation. I should have put her in another day program, but she had friends there, was not a good situation.

Down’s syndrome people do not learn to express pain or where it is at. Check this first. I had a Downs Syndrome family member and although she was diagnosed with Alzheimer’s, I believe it was something else. I also found out from a Doctor at U of M who has a Downs son that their ventricles are normally larger than people without Downs. Look hard for other reasons for changes, and support them in life and love. My family member worked at a workshop and it was extremely loud, the social worker screamed at them, falls on the bus and work accidents not reported. Bullying, all kinds of things. Look at that first. Is someone scaring them?

Hello, I am the youngest of 8 children, and my middle brother Luke has Downs and has been diagnosed with Alzheimer's. Luke is 61 and our parents both passed away. Our brother lives with our oldest sibling , still goes to dayhab but since his diagnosis has rapidly declined. He forgets his siblings, where he is, how to move around in siblings familiar homes and has a fearfull look on his face many times. It's heartbreaking. We have all maintained close relationship w Luke and spend time with our brother. He takes turns visiting each of us, many times staying overnight. Our eldest sibling has legal guardianship of our brother as our parents expressed it be so in their will. Most of us (3 other sisters) try and support our sister by making sure she does get breaks etc. and we of course want to spend the time with our brother. ( Other Brothers do not spend so much time w him). Our fear is that Luke will have to go to a nursing home eventually, which seems probably next year at this rate. Do people successfully keep these kids at home till the end? Is this possible and are there outside organizations other than hospice who could help with his care if it became a possibility? I cannot stand the idea of my brother in a facility as he has always been cared for at home, being rather high functioning. But I don't think this would be an easy sell to other family members who worry it'd just be too much work to keep him safe and well cared for. It's very very hard to imagine him not at home as it's always been his most favorite place to be, surrounded by family. Note; we all rallied for both our parents with the support of hospice. So we've done it before.

Hi Susan, I am so sorry to hear about your brother.

Seeing the changes in him must be very hard. Some people with Alzheimer’s do remain at home, usually with extra care provided by the local authority or a homecare agency, but everyone experiences dementia differently, so it’s difficult to predict what his needs might be in the future. It can be hard on those caring for someone, but as you say, you have supported your parents in this way with the help of a hospice, so if family members are willing, and his needs can be met at home, then this can be what you can aim for.

We have local dementia support workers who can meet with you to discuss support for this, and you can always call our helpline to talk things through: 0300 222 1122.

-Helpline Advisor (Alzheimer's Society)

I am care giver of 54 yr woman with Down Syndrome & Dementia. Also in last yr she has completely lost eye sight. Unill 18 months ago she was a master weaver, a champion special Olympics 🏊, lived independently, graduated frm high schoo, etc... Need advice. Would also like info on chat rooms with other care givers with same clients, anything. She has lost all capacity to do any of the above. She is very healthy, lives with her patents & is loved & very well taken care of. Thank you

I am so sorry to hear about this woman who has lost her sight. This must be a very sad development for her. However, there are many activities that make use of audio technology such as talking newspapers, audio books, audio description for TV and films and tactile and/or large print games. Using the other senses such as scent, touch and movement can help too. Activities could include massage, foot baths, food tasting, cookery, singing and dancing. And this link will take you to our online forum where you can search for conversations between other caregivers with similar clients or relatives: http://bit.ly/25G4hKL Do call our Helpline 0300 222 1122 if you want to talk more about this.

Helpline advisor (Alzheimer's Society)

This is really helpful. As we develop trying to generate dementia friendly communities this work pushes us to establish links with those working with people having Down's syndrome. I work with an older people's forum in Wales and it is easy to forget that the numbers of people with Down's syndrome who are living longer lives and can be left out of planning services and support for older people. Separate provision is the outcome of historical attitudes and evolution of charities. How can we develop the natural openness of services to be inclusive?

Hello Ron,

Thank you so much for taking the time to get in touch. We’re pleased to hear that you found this blog useful.

We agree that this is a challenging area, but rest assured, Alzheimer’s Society is working hard to raise awareness and increase understanding for everyone affected by dementia.

We’re helping to build more dementia-friendly communities through our Dementia Friends programme. You might be interested in this recent blog that mentions the 2.5 million milestone: ‘Denise’s story: ‘Dementia hasn’t dented Dad’s enthusiasm for cherished memories’.

We also fund research that looks specifically at both the experiences and quality of life of people with Down’s syndrome and dementia and the underlying biomedical causes.

We recently published a blog, which may be of interest: ‘Supporting people with learning disabilities and dementia’.

Thanks again for sharing your thoughts and keep up the great work, Ron!

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