Supporting an Adult with Down Syndrome: A Practical Guide for Support Workers

Supporting an adult with Down syndrome: a practical guide for support workers

Most induction material about Down syndrome tells you about chromosome 21 and then stops. That is not useful at 6:45 on a Tuesday morning when somebody will not come out of the bathroom and you have forty minutes until the bus.

This guide is for people who do the actual work. It assumes you are competent and that nobody has told you the Down syndrome-specific things, because in Australian disability services nobody usually does.

Some of it is clinical. Most of it is about how to read a situation correctly, because the commonest failure in Down syndrome support is not a skills gap. It is a misreading — of what somebody is doing, and why.

Give it eight seconds

This is the first and most useful thing.

Processing takes longer. Word retrieval takes longer. Motor initiation takes longer. If you ask a question and wait three seconds, you will get silence and conclude the person did not understand, and then you will rephrase it — which resets the clock and makes it worse.

Ask once. Count silently to eight. It will feel absurd. You will get an answer a lot of the time.

The same applies to physical tasks. If you ask someone to stand up and they do not move in three seconds, the most common mistake is to ask again or to start helping. Wait. The signal takes longer to become a movement.

Related: one instruction at a time. “Can you get your shoes and your jacket and we’ll head out” is three things held simultaneously, and verbal short-term memory is the specific area of difficulty in Down syndrome. Say “shoes,” wait, then say “jacket.” It is faster overall.

And write things down. A time said aloud is gone. A time written on a card stays. This one habit will improve your shifts more than anything else in this guide. Communication and Down syndrome explains why it works.

“Stubborn” is a conclusion, not an observation

You will hear people with Down syndrome described as stubborn more than any other group. Sometimes that is accurate — people are allowed to be stubborn. But in supported settings it is usually a label applied to a behaviour that has a different explanation, and working through the alternatives first will make you much better at this job.

When somebody who normally cooperates stops cooperating, run this list:

Did they understand? Was it one instruction, with enough time? Did they say yes because yes is easier than working out what you meant? Many people with Down syndrome will agree to things they have not understood, which is why “do you understand?” is a useless question and “show me what you’re going to do” is a good one.

Can they hear you? Hearing loss in Down syndrome is extremely common and often progressive into adulthood. Someone who seems not to follow instructions, or who has withdrawn from group conversation, may have lost hearing since their last audiology appointment — which may have been years ago.

Are they in pain? This is the big one. More on it below.

Is this a routine disruption? Routine matters more than most people allow for. If the order of the morning changed, or a different worker is doing it, or the usual mug is in the dishwasher, the resistance may be about that and may be entirely resolvable by fixing it.

Are they tired? Obstructive sleep apnoea affects most adults with Down syndrome and most of them are undiagnosed. A person who is chronically sleep-deprived has no tolerance for anything. If someone is consistently difficult in the mornings and sleepy in the afternoons, that is a medical question, not a behaviour one — see sleep apnoea and Down syndrome.

Did they say no? This is worth sitting with. If an adult declines something and the response is to keep pushing until they comply, you are not providing support. Sometimes the task genuinely has to happen. Often it does not, or not now.

Is it the groove? There is a well-described tendency in Down syndrome toward strong routines and sequences — doing things in a fixed order, in a fixed way, often slowly and thoroughly. Clinicians sometimes call it “the groove.” Within limits it is a strength: it makes people reliable and independent. It becomes a problem when the groove gets too rigid or when it collides with a schedule. The way to manage it is to build the routine deliberately and to introduce variation as part of the routine, rather than to fight it on the day. The way not to manage it is to interrupt it and hurry someone, which almost always costs more time than it saves.

Pain, and how it presents

People with Down syndrome are frequently described as having a high pain threshold. The evidence suggests something different and more worrying: the pain is felt, and the expression of it is delayed and atypical. Which means pain goes unreported, untreated and often unnoticed for a long time.

How pain actually presents in someone with limited expressive language:

• withdrawal, going quiet, not joining in
• refusing a routine they have always accepted, particularly one that involves the painful area
• irritability or aggression, especially suddenly
• changes in eating or sleeping
• rocking, self-talk increasing, repetitive movements
• guarding — holding, protecting, favouring one side
• not using a limb
• resistance to being touched or moved in a particular way

None of these look like “I have a toothache.” All of them look like behaviour.

The most common sources, in rough order of how often they are missed: dental problems — periodontal disease is very common and starts early; constipation, which is extremely common and which people will not report; reflux; ear infection; musculoskeletal pain, particularly hips, knees and feet, where joint laxity and flat feet are common; menstrual pain, which is routinely under-recognised; and cervical spine problems, which matter because about one in ten adults with Down syndrome has atlantoaxial instability.

That last one needs its own line. New neck pain, a change in walking, loss of hand function, a new head tilt, or new bladder problems in a person with Down syndrome should be escalated the same day. Those are signs of cervical myelopathy — spinal cord compression — and they are a medical urgency, not a behaviour.

The practical rule: before you write an incident report about behaviour, ask when the person last saw a dentist, whether they have had a bowel movement in the last two days, and whether anything hurts.

Self-talk is normal

Many adults with Down syndrome talk to themselves — narrating what they are doing, replaying conversations, telling themselves off in somebody else’s voice, holding both sides of a dialogue. It can be loud and it can go on for a long time.

In the great majority of cases this is not psychosis, not hallucination and not a symptom of anything. It is an ordinary and well-documented feature of Down syndrome, and it serves a function: it is how a lot of people process the day and regulate themselves. It typically happens when the person is alone or relaxed.

Do not interrupt it, do not correct it, and do not report it as a symptom unless something has changed.

What is worth reporting is change: a marked increase in self-talk, self-talk that is distressed rather than neutral, self-talk that is new, or self-talk accompanied by other changes — withdrawal, loss of skills, slowing, freezing. Increased self-talk is listed among the features of Down syndrome regression disorder, so in the context of other changes it matters. On its own, in someone who has always done it, it is just them.

Mealtimes and choking

This is where the serious risk sits, and it is under-appreciated.

Several features of Down syndrome combine to raise choking and aspiration risk: low muscle tone affecting the tongue and swallow, a relatively large tongue in a smaller mouth, dental problems affecting chewing, a tendency to eat quickly, and sometimes reduced sensation. Dysphagia is more common than most workers are told, and it can develop or worsen in adulthood — particularly with ageing and with dementia.

What that means on shift:

Follow the mealtime management plan exactly. If one exists, it specifies texture, fluid thickness, positioning, supervision level and pacing, and it exists because a speech pathologist assessed a real risk. Deviating from it “just this once” is how people die. If the plan says minced and moist, the birthday cake is minced and moist.

If there is no mealtime management plan and you are seeing coughing, wet voice after swallowing, throat clearing, food residue in the mouth, recurrent chest infections, slow eating, or avoiding certain textures — escalate for a swallowing assessment. Recurrent chest infections in particular are often aspiration and are often attributed to something else.

Positioning matters. Upright, feet supported, not reclined, not walking around with food, not lying down afterwards.

Pace matters. Someone eating quickly needs portions broken up rather than instruction to slow down.

Supervision means watching. Not being in the room doing something else.

Dysphagia management is one of the eight core high intensity support skills under the NDIS Practice Standards, which means it carries specific training, competency and supervision requirements for workers delivering it. If you are supporting someone with a dysphagia plan and you have not been trained and signed off, that is a conversation to have with your supervisor. Our high intensity supports guides set out the obligations.

The other mealtime issue is weight. Obesity is substantially more common in Down syndrome, driven by a lower resting metabolic rate, hypotonia, reduced activity and sometimes hypothyroidism. Generic advice to eat less and move more performs poorly. What works is the same as for anyone — portion control, better choices, actual physical activity — delivered consistently by everybody on the roster rather than being quietly undone by the worker who brings McDonald’s on Fridays. If weight is a goal in the plan, every worker needs to know it and apply it, and a dietitian at $178.99 per hour who understands the physiology is worth more than another person telling the person to eat salad.

Health things to watch for and report

You are the surveillance system. Nobody else sees the person daily.

Things worth reporting even when they seem small, because in Down syndrome they are specific flags:

Fatigue, weight gain, slowing, low mood, constipation, feeling cold, dry skin — the hypothyroidism cluster. Thyroid disease is 10 to 30 times more common in Down syndrome and the standard recommendation is a TSH every one to two years from 21. Most of what gets written up as “flat” and “unmotivated” in a person with Down syndrome deserves a blood test first.

Snoring, choking or gasping in sleep, daytime sleepiness, morning headaches, falling asleep during the day — sleep apnoea. Record the specifics: “fell asleep in the van on 11 of 14 trips” is worth far more than “seems tired.”

Not responding, turning the TV up, withdrawing from group conversation, asking people to repeat — hearing.

Squinting, holding things close, bumping into things, becoming reluctant in new places, trouble on stairs — vision. Cataract occurs earlier in Down syndrome and keratoconus is more common.

Any loss of a skill they used to have. This is the one to be most alert to, at any age. A person who has stopped doing something they used to do — making their own breakfast, walking to the shops, starting conversations — has had a change, and change in Down syndrome has a long list of treatable causes. Write it down with a date. In both Down syndrome regression disorder and early Alzheimer’s disease, dated functional records are the diagnostic evidence, and they can only come from the people on shift.

New seizures. Report immediately. New-onset epilepsy in an adult with Down syndrome is significant and in middle age is associated with early Alzheimer’s pathology.

How to write it up: observations, not interpretations. “Stood at the bathroom door for 8 minutes without moving, did not respond to two verbal prompts, moved when I offered my arm” is clinical evidence. “Refused to shower” is a judgment that can send a person down a behaviour pathway and keep them there.

Adulthood: the part most services get wrong

Three things, and they matter as much as anything clinical.

Talk to the adult

Not past them to the family member. Not about them in the third person while they are in the room. Not in a different voice from the one you use with colleagues.

Adults with Down syndrome consistently report this as the thing that bothers them most, and they are right to. Age-appropriate language, age-appropriate activities, age-appropriate music, age-appropriate everything. A 40-year-old man does not need a cartoon on and should not be called “buddy” by someone fifteen years younger.

Let them decide, including badly

Supported decision-making means presenting real options in an accessible way and going with the person’s choice. It includes choices you think are wrong.

Dignity of risk is the principle that people have the right to take ordinary risks, and that a life stripped of all risk is a diminished life. Someone can buy something they will regret, eat something unhealthy, stay up too late, be rude to a housemate, spend their money on the wrong thing.

Where you do override a choice, it should be for a serious and immediate reason, it should be documented, and it should be the exception. If you look back over a month and cannot find a single decision a person made that you disagreed with, decisions are not being made by them.

Privacy, relationships and the things nobody wants to discuss

Adults with Down syndrome have relationships, sexual feelings and the right to privacy. Services are often set up as though they do not.

Practically: knock. Do not go through someone’s things without a reason. Do not discuss their body, continence or menstrual cycle where others can hear. Do not read their phone messages.

And on safeguarding — people with intellectual disability experience abuse at substantially elevated rates, most often from people they know, including support workers. The things that protect people are the things covered elsewhere in this guide: being able to say no and having it respected, having unpaid relationships outside the service, knowing what is and is not okay, having somebody independent to tell, and being believed. If something is reported to you, or something does not look right, you have an obligation to report it. Our guide to safeguards in supported independent living sets out how.

A short checklist for a new shift

If you are meeting someone with Down syndrome for the first time:

• Read the communication profile before you walk in. If there isn’t one, ask why not.
• Ask the outgoing worker what the person’s routine order is, and follow it exactly on day one.
• Find out how they say no, and how you will know they are uncomfortable.
• Find out what they are good at and ask them about it. People are much more forthcoming about the thing they like.
• Find out whether there is a mealtime plan, and read it.
• Find out whether they use a communication device or signs, and learn five signs before your next shift.
• Ask what they do for themselves — and then let them do it, slowly, even though you could do it faster.
• Use their name, not “mate” or “buddy” or “darling.”
• Count to eight.

The last one is the whole job in miniature. Most of what goes wrong between support workers and people with Down syndrome is a timing problem being mistaken for an ability problem or an attitude problem. Slow down and most of it resolves itself.