Supporting Someone With Dementia: A Guide for Support Workers

Supporting someone with dementia: a guide for support workers

Most dementia training for support workers covers the types of dementia and then stops. That is not what you need at 7:15 in the morning when somebody will not let you in the bathroom and the transport is booked for eight.

This guide is the practical version. It assumes you are competent and that nobody has told you the things that actually matter on shift.

Three ideas run through all of it. Consistency is a clinical intervention, not a preference. Behaviour is communication, not a symptom to suppress. And the person is still there, considerably longer than the public story about dementia suggests.

Consistency is the job

Start here, because it is the thing most often treated as optional.

A person who cannot form new memories relies entirely on familiarity. A person whose confusion increases with unpredictability is destabilised by variation. So two workers doing the same task in different orders, with different words, at different times, is not a minor inefficiency — it produces confusion, distress and resistance by itself.

Which means:

Follow the written routine exactly. Same order, same words, even where you think your way is better. If it genuinely is better, raise it so the routine changes for everybody rather than just for your shifts.

Read the communication log at the start of every shift and write in it at the end. The person cannot supply the information themselves, so anything living in one worker’s head is lost at handover. This is the closest thing to continuity of memory you can give somebody.

Do not introduce changes on your own initiative — a new route, a rearranged cupboard, a different brand. It costs this person something it would not cost you.

Say what is happening before it happens, and warn before transitions and before touching.

Behaviour is communication

The second core idea, and it changes what you do in the moment.

When someone with dementia is agitated, resistant, calling out or trying to leave, the useful question is not how to stop it. It is what is this telling me?

Work through this order, because it is the order that gets results:

1. Is this sudden? If a person with dementia is suddenly much worse — more confused, more agitated, not themselves — that is delirium until proven otherwise. Urinary tract infection, chest infection, constipation, dehydration, pain, urinary retention, a medication change. It needs a medical review the same day, and you are usually the person who notices. Say the words out loud to whoever is making decisions.

2. Is there pain? People with dementia under-report pain, and standard pain questions require memory and language. Look for grimacing, guarding, resisting being moved or washed, groaning, changed walking, loss of appetite, new restlessness. Arthritis, teeth, constipation, pressure areas, urinary retention, toenails.

3. Is a basic need unmet? Hungry, thirsty, needs the toilet, too hot, too cold, tired, uncomfortable. And check the hearing aid and glasses — a person who cannot hear what you are asking and cannot see who is asking will look confused and may become frightened.

4. Is it the environment? Noise, a television, too many people, poor light, glare, a patterned floor, a dark doorway.

5. Is it me? Was I rushing? Did I give two instructions at once? Did I touch them without warning? Did I correct them? A large share of personal care incidents are produced by the approach rather than the task.

6. Is it boredom? Enormously under-recognised and a major driver of behaviour.

7. Only then, is it the dementia?

Reaching for seven first is how people end up medicated for a urine infection. Changed behaviour and dementia covers this in depth.

Communication: what to do and not do

Get their attention first — name, eye contact, approach from the front. Talking from behind or across a room produces nothing.

One idea per sentence, then wait.

Use names, not pronouns. “Your daughter Sarah is coming,” not “she’s coming.”

Yes/no questions when you need an answer; two options, shown physically where you can.

Wait longer than feels natural.

Watch your tone and face, which are being read more accurately than your words. Someone who cannot follow a sentence will detect impatience instantly and respond to that.

Respond to the feeling, not the facts. If she asks where her mother is and her mother died in 1987, do not deliver that. “Tell me about your mum” works.

Never say “don’t you remember?” It asks for the one thing they cannot do and lands as an accusation.

Do not quiz. No “who am I?”, no “what did you have for lunch?” If they do not recognise you, say who you are warmly and move on.

Do not argue about facts, ever. Nobody wins and the cost is the relationship.

Do not talk about the person in the third person while they are present. People with dementia name this as the thing that upsets them most.

Do not use a special voice. Clearer and slower helps; loud, singsong or baby talk does not, and it is noticed.

Communicating with someone who has dementia has more.

Personal care without a fight

Where most incidents happen and most of them are preventable.

Slow down. Being rushed causes more distress than anything else on a shift.

Explain each step as you do it, not as a sequence at the start.

Warm the room first and keep the person covered. Being undressed by someone when you do not know why is frightening.

Offer choices about when and how, not whether. “Shower now or after breakfast?” gets cooperation; “time for your shower” gets refusal.

Accept a wash at the basin on a bad day. A clean person who was not distressed is a better outcome than a shower achieved by force.

Hand them the flannel and let them do what they can. Prompting beats doing, and it maintains function.

Stop if it is going badly and come back in twenty minutes. A task abandoned and retried later is not a failure.

Mirrors can distress people who do not recognise themselves — cover them if so.

Mealtimes, mobility and safety

Mealtimes. Follow any mealtime management plan exactly — texture, fluid thickness, positioning, supervision, pacing — with no exceptions. Swallowing is affected in later dementia and aspiration pneumonia is a leading cause of death. Watch for coughing, a wet voice after swallowing, residue in the mouth, slow eating or recurrent chest infections, and escalate. Give one food at a time, use contrasting crockery so food is visible against the plate, and allow a long time.

Mouth care twice daily, including for people eating little. The bacteria that cause aspiration pneumonia come largely from the mouth.

Falls. Remove loose rugs, light the route to the bathroom with sensor lights, check footwear is firm and enclosed, respond fast to toilet urgency, and do not talk to someone while they negotiate steps.

Walking with purpose. Usually has a reason — looking for someone, going to work, going home, needing the toilet, pain, boredom, needing to move. Find the reason and provide a safe place to walk. Do not lock a door: for an NDIS participant that is environmental restraint and it requires a behaviour support plan, state authorisation and monthly reporting.

Continence. Prompted toileting on a schedule prevents most accidents. Never restrict fluids to reduce them — it causes infections, constipation and worse confusion.

The restrictive practice line

Know this, because providers coming from aged care frequently do not.

For an NDIS participant, five categories of restrictive practice are regulated: seclusion, chemical restraint, mechanical restraint, physical restraint and environmental restraint.

That means a locked door, a locked kitchen or fridge, a restricted garden, a held phone, rationed cigarettes, or medication given primarily to settle behaviour rather than treat a diagnosed condition are all regulated. They require a behaviour support plan from a registered practitioner, state authorisation, lodgement with the NDIS Commission and monthly reporting — plus a documented plan to reduce and eliminate them.

Using one without authorisation or without a plan is a reportable incident.

If you are being asked to lock a door or give medication to settle someone and there is no plan, raise it with your supervisor in writing. Behaviour support and restrictive practices sets out the detail.

Younger onset dementia: what changes

If the person is in their fifties, a lot of standard practice is wrong for them.

Age-appropriate activity. Not a singalong and not craft. The gym, a walk, the shed, cooking, work, volunteering, music they chose, sport on television, driving somewhere. What were they doing two years ago?

Physical capacity is preserved. A fit 56-year-old who wants to leave the house needs supervision rather than nursing, and that is a different job.

Insight may be intact, so do not talk as though they do not understand. They may understand entirely, including what is coming.

They had a career, a mortgage and children last year. Talk to them accordingly.

The partner is in their forties or fifties and is frequently working, parenting and caring at once. Mentioning Carer Gateway on 1800 422 737 takes ten seconds.

See younger onset dementia.

Things to escalate

• Sudden worsening of confusion or behaviour — possible delirium; ask for a urine culture and a same-day review
• Any sign of pain in someone who cannot report it
• A fall, with or without injury
• Coughing at meals, a wet voice after swallowing, or recurrent chest infections
• Severe constipation, with days recorded
• New weakness, facial droop or speech change — call 000
• A seizure
• Non-blanching redness over sacrum, heels, hips or elbows
• Weight loss
• Expressions of hopelessness or suicidal thoughts
• Any restrictive practice in use without a plan or authorisation
• Loss of a skill the person previously had, with the date

How to be good at this

What people with dementia and their families say about the workers they value.

They’re consistent. Named first, nearly always.

They’re unhurried. Or at least they do not transmit the hurry.

They talk to me like an adult.

They let me do what I can, even slowly.

They don’t correct me.

They know my history. The job, the kids’ names, the football team, the music. Knowing five facts about somebody’s life transforms what you can do with them.

They notice my partner. The load on families here is enormous and largely invisible.

They write things down. Both because the person cannot, and because dated records of function are what plan reassessments are built on.

A checklist for a new shift

• Read the support plan, the routine, any mealtime and behaviour support plan, and the communication log
• Learn five things about the person’s life before you walk in
• Find out what they do for themselves, and leave it to them
• Find out their better hours
• Find out their triggers from the records, not by discovering them
• Find out how they show pain and how they show they have had enough
• Check the hearing aid and glasses are in
• Follow the routine exactly, same order, same words
• Warn before transitions and before touching
• Use their name
• Know what to escalate, and to whom
• Write down what they did unaided, with the time

And if you remember three things: be consistent, read behaviour as communication, and when someone is suddenly worse, ask whether it could be an infection. Those three habits prevent more harm than anything else available to you.

Looking after yourself in this work

Dementia support has a high burnout rate and it is worth understanding why rather than treating it as a personal shortcoming.

You will do the same routine, in the same order, with the same words, for months, and be greeted as a stranger. You will be accused of stealing things you did not take. You will be the target of things said by somebody whose filter has gone. You will watch a family grieve somebody who is in the room. And your best work — the incident that did not happen because you noticed the hearing aid was out and fixed it — will be invisible to everybody, including your employer.

What helps:

Understand the mechanism. Workers who know that an accusation is a failure to reconstruct events, rather than a judgment of them, last considerably longer in this work than those who take it personally. That is not a platitude; it is the single best predictor of who stays.

Debrief with somebody. A supervisor, the team meeting, or a workmate at the end of a bad shift. Taking it home and sitting with it by yourself is what finishes people in this work.

Keep your own boundaries. Warmth is not the same as unlimited availability, and consistency includes being consistent about limits.

Report rather than absorb. Being abused, propositioned or put at risk belongs in an incident report and with your supervisor in writing, not in your own head. A service that lets workers absorb this is failing everybody.

Ask for the training in writing. Dementia support needs specific skills — reading behaviour, de-escalation, communication, personal care without a fight — and if your employer has not provided them, asking on the record is reasonable and creates a trail.

Notice what you achieved. A routine that held, a shower that happened without distress, an infection caught early, a family that got an hour off. None of it will be obvious from outside and all of it is the job.