Atlas›Domain V · Systemic, relational, group & community›Guide 164
Guide V-164

iSupport

2019
A 26 · L 62 · M 1242 interventions in the Trinity explorer
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[source: …] where a claim comes from[uncertain] not confirmed in a primary source[synthesis] the writer's reconstruction

1. Introduction

Version followed: WHO generic iSupport for Dementia: Training and support manual for carers of people with dementia (WHO 2019; 5 modules, 23 lessons; online course on the PAHO/WHO virtual campus). Front matter and Modules 1 to 3 (Lesson 2) were read in the WHO-licensed Qatar (QNDP/Hamad) English adaptation and an English copy of the WHO generic manual. The rest of Module 3, plus Modules 4 and 5, were read mainly in the Australian adaptation (Flinders University 2022, distributed by Bolton Clarke), supplemented by the Qatar online lesson pages. Where the Australian wording or structure differs from WHO's, this is flagged. The e-coach procedure follows the Dutch minimally guided trial protocol (Pinto-Bruno et al. 2019).

What it is. iSupport is not a psychotherapy. WHO calls it a self-help skills and training programme for family and other unpaid carers of people with dementia. Its stated aim is to prevent or reduce the mental and physical health problems that come with caregiving, and to improve carers' quality of life. It was built as an online course; a printable manual exists for low-bandwidth settings, and countries adapt both. Each lesson combines short readings, case examples about recurring carer families, multiple-choice "check your understanding" questions with explained answers, reflective activities, and a relaxation exercise. [source: WHO publication page; WHO iSupport team page; Qatar adaptation PDF; Pinto-Bruno 2019]

How change is meant to happen. The programme draws on CBT principles: psychoeducation, problem solving, relaxation, activity scheduling and cognitive reframing. Carers who understand dementia, communicate and care more skilfully, interpret behaviour as an expression of needs or brain change, look after themselves (relaxation, pleasant activities, changing unhelpful thoughts) and draw in other helpers are expected to feel less strained and give better care. [source: Pinto-Bruno 2019; Australian Module 5] The manual notes that it can also be used by volunteers, health workers and support groups. A therapist's role is therefore to recommend it, guide its use (as an e-coach or facilitator) or weave its lessons into carer sessions. Procedures for clinician guidance are marked [synthesis] unless the trial protocol describes them. [source: Qatar adaptation PDF]

2. Framework

Structure (WHO generic). [source: WHO publication page; Pinto-Bruno 2019; Qatar adaptation PDF]

  • Module 1, Introduction to dementia. One lesson: what dementia is, its causes and progression, first steps if dementia is suspected, getting help, and the programme's focus on the carer.
  • Module 2, Being a carer. L1 The journey together; L2 Improving communication; L3 Supported decision-making; L4 Involving others.
  • Module 3, Caring for me. L1 Reducing stress in everyday life; L2 Making time for pleasant activities; L3 Thinking differently.
  • Module 4, Providing everyday care. L1 Eating and drinking: more pleasant mealtimes; L2 Eating, drinking and preventing health problems; L3 Toileting and continence care; L4 Personal care; L5 An enjoyable day.
  • Module 5, Dealing with behaviour changes. L1 Introduction to behaviour changes; L2 Memory loss; L3 Aggression; L4 Depression, anxiety and apathy; L5 Difficulty sleeping; L6 Delusions and hallucinations; L7 Repetitive behaviour; L8 Walking and getting lost; L9 Changes in judgement; L10 Putting it all together.
  • Australian variant. Lessons are called "units" and Module 5 is "Dealing with changed behaviour", with 7 units: person-centred care, aggression, mood or interest, sleep, delusions and hallucinations, walking and getting lost, judgement. Memory loss, repetitive behaviour and the closing lesson do not appear as separate units in the source text. [source: Bolton Clarke Module 5] [uncertain: the full unit list]

Lesson anatomy. Each lesson has: why it matters, how it helps, and what you will learn; short readings with a case vignette; check-your-understanding questions with explained answers; reflective activities with no right answers; tip, reminder and "keep in mind" boxes; a summary; and a relaxation exercise. [source: Qatar adaptation PDF; Pinto-Bruno 2019]

Dose and format.

  • Self-paced and individual. Carers may work in order or pick only the lessons relevant to them. [source: WHO publication page]
  • In the Dutch trial, most carers were expected to finish within about 3 months, with regular use encouraged. [source: Pinto-Bruno 2019]
  • The online version personalises content: the carer enters their own name, the name of the person with dementia and their relationship, and receives automated feedback on exercises. [source: Pinto-Bruno 2019]
  • Optional minimal guidance: volunteer e-coaches with 4 hours of training send up to 3 proactive emails (at the start, at 1 month and at 2 months) and answer carer-initiated contact, aiming for at most about 10 interactions. [source: Pinto-Bruno 2019]
  • After completion, iSupport Lite (6 posters of key messages) serves as a refresher. [source: WHO iSupport team page]

Phases for a clinician using it. Phases B to D below are [synthesis], because the sources give no criteria for moving between modules.

  • A. Orientation (session or call 1). Assess the carer's strain, mood and risk. Confirm that the person with dementia has had a medical diagnosis (Module 1 insists on seeing a doctor first). Set up access and agree on lesson choices.
  • B. Carer foundations (weeks 1 to 4). Module 1, Module 2 and Module 3 L1 (start daily relaxation early). Move on when the carer can name what dementia is doing to the person, has a help map, and practises some relaxation.
  • C. Targeted skills (weeks 3 to 10). Module 4 or 5 lessons matched to the carer's most stressful care task or behaviour, plus Module 3 L2 and L3 when low mood, guilt or self-neglect appear. Move on when the target behaviour or task has had at least one ABC-style analysis and a tried plan, reviewed.
  • D. Consolidation (around month 3). Module 5 L10 or a review of the diaries, then iSupport Lite. Plan re-entry into lessons as dementia progresses.

Licensing and fidelity. The WHO manual is released under CC BY-NC-SA 3.0 IGO. National or local adaptations go through WHO (whodementia@who.int) and follow a WHO adaptation and implementation guide. [source: Qatar adaptation PDF; WHO iSupport team page] No certification for facilitators or clinicians, and no fidelity monitoring for those recommending or guiding the programme, was found. [uncertain: the adaptation guide itself] Adaptations change names, activities, timetables and helpline details. [source: Pinto-Bruno 2019]

3. Guiding principles

[source: Qatar adaptation PDF; Bolton Clarke Modules 3 to 5; Hamad Module 5 pages; Pinto-Bruno 2019. The final principle is [synthesis].]

  • The carer is the client. Every lesson asks what the carer needs as well as how to care. In practice, open each contact with the carer's own stress and self-care.
  • Carer choice and self-pacing. Lessons are chosen by need. Let the carer pick the most pressing lesson rather than prescribing the full sequence.
  • Medical check first. Only a doctor can tell dementia from treatable causes of confusion such as depression, infection, medication effects or vitamin deficiency. Any sudden behaviour change prompts a GP review before behavioural work.
  • Behaviour expresses needs or brain change. Look for hunger, pain, tiredness, toileting, illness, medication or environmental triggers before treating behaviour as defiance.
  • Person-centred stance. Imagine the person's position; respect dignity, choices and preferences. Ask "how would this feel from inside?" before choosing a response.
  • Never blame, shame, threaten or punish. This holds for incontinence, bathing refusal, sexual remarks and repetition. Coach the carer to name the behaviour calmly and avoid scolding.
  • Stay calm; don't argue or correct harshly. Acknowledge the feeling behind a belief, then distract or redirect. Practise this with the carer as a rehearsed sequence.
  • Different approaches work at different times. If one approach fails, try another; good and bad days are normal. Plans are experiments; review and change them.
  • Preserve independence. Prompt, stay nearby, break tasks into steps, and don't take over. Help the carer find the smallest step the person can still do.
  • Supported decision-making and planning ahead. Involve the person in decisions and record preferences early. Use Module 2 L3 while the person can still express wishes.
  • One carer cannot meet all needs. Reach out to family, friends and services. A help map and a specific request are concrete outputs of the work.
  • "You cannot change what happens, but you can change your response" (Australian Module 3). This is the cognitive principle behind Thinking differently.
  • Some feelings are justified. Reframing must not dismiss real loss such as hospitalisation or bereavement. Validate grief before any reframe.
  • Relaxation and pleasure are part of good care, not selfish. Guilt about self-care is reframed this way, so schedule self-care as part of the care plan.
  • Adapt to the local context. Names, foods, activities and services are localised. Use the national version and its helplines where one exists.
  • Clinician stance (light-touch guide, not a therapist replacing the programme). Encourage, clarify and signpost, as the e-coaches did. Escalate to fuller carer therapy when risk or complexity exceeds self-help. [synthesis]

4. Intervention inventory

The inventory runs in programme order: delivery procedures, then Modules 1 to 5. All example language is the clinician's or coach's, written for this guide and labelled (illustrative). The programme's own exercises address the carer directly; here they are written as what you guide the carer through.

A1. Onboarding and personalisation

  • Purpose. Start the programme so that the content refers to the carer's own situation. The online version uses the carer's name, the name of the person with dementia, their relationship and basic demographics. [source: Pinto-Bruno 2019]
  • Steps.
    1. Choose the national adaptation if one exists. WHO lists versions for Australia, New Zealand, Viet Nam, China, Malta, Portugal, the Russian Federation, Spain, Switzerland, Tunisia, the UK, Czechia, Nigeria, the Republic of Korea, Ukraine, Hong Kong SAR and Chinese Taipei. Otherwise use the generic course on the PAHO campus, or the printed manual where internet access is poor. [source: WHO iSupport team page]
    2. Help the carer register and enter their details.
    3. Explain the lesson anatomy and that lessons can be chosen freely.
    4. Agree a rhythm, for example 1 to 2 lessons a week over about 3 months. [synthesis, based on the 3-month expectation in Pinto-Bruno 2019]
  • Example language (illustrative). "You don't have to do it all. Let's pick the two lessons that match what's hardest this week."
  • Watch for. Low digital literacy, which calls for the printed manual or a family member's help. Carers who start with Module 5 in crisis without the basics; pair that with Module 3 L1.

A2. Check-your-understanding questions and feedback

  • Purpose. Consolidate learning through vignette-based multiple-choice questions. Explained answers appear at the end of the lesson in print, or as automated feedback online. [source: Qatar adaptation PDF; Pinto-Bruno 2019]
  • Steps. The carer reads the vignette, chooses a response, and then reads why each option is better or worse. In a guided session, ask the carer why they chose it and how that maps onto their own week. [synthesis]
  • Example language (illustrative). "You picked 'tell him to be more careful'. What made that feel right? What does the answer page say dementia does to that strategy?"
  • Watch for. Carers who choose a correction or scolding option. That is a cue to revisit Module 1 (the memory loss is not deliberate).

A3. Minimal-guidance e-coaching

  • Purpose. Increase uptake and adherence, clarify content and signpost further support. [source: Pinto-Bruno 2019]
  • Steps (Dutch trial protocol).
    1. Coach contact is optional, at the carer's request.
    2. The coach sends a first email right away, then at 1 month and 2 months.
    3. The coach answers carer-initiated messages at any time, aiming for at most about 10 interactions in total.
    4. Content of each contact: encourage continued use, clarify lesson content, help find further support.
    5. Coaches in the trial were helpline volunteers with a 4-hour training.
  • Example language (illustrative). "It's been a month. How are the lessons going? Many carers find the relaxation lesson useful if things feel tense."
  • Watch for. Requests that go beyond the coach role (crisis, carer depression, abuse concerns). Escalate these to a clinician. [synthesis]

A4. iSupport Lite refresher

  • Purpose. Reinforce skills after the full programme. Developed during COVID-19. [source: WHO iSupport team page]
  • Steps. Give or display the 6 posters at follow-up: reaching out to others for help; caring for myself; ensuring the person continues to receive care; responding to changes; providing everyday care; communicating information. Ask which poster the carer is using least. [synthesis]
  • Example language (illustrative). "Which of these six would you most like to get back to this month?"
  • Watch for. Use Lite only after the full programme, as WHO intends; it is not a substitute.

M1. Introduction to dementia (Module 1)

  • Purpose. Psychoeducation on what dementia is, its causes and progression, first steps if dementia is suspected, and where to get help. It also orients the carer to the programme's focus on their own wellbeing. [source: Qatar adaptation PDF]
  • Steps.
    1. Explain dementia as an illness of the brain.
    2. Insist that a doctor sees the person first, because only a doctor can separate dementia from treatable causes of memory problems (depression, urinary infection, medication side effects, vitamin deficiency, brain tumour).
    3. Identify local help: the national helpline or a family physician.
    4. Point to the later modules on self-care.
  • Example language (illustrative). "Before we treat this as dementia, has a doctor checked for things that can mimic it, like an infection or a medicine side effect?"
  • Watch for. Undiagnosed or self-diagnosed dementia. Refer before skills work.

M2.1. The journey together: planning ahead

  • Purpose. Understand how roles change, stay connected, plan pleasant activities and relaxation, involve others, and plan ahead while the person can still say what they want. [source: Qatar adaptation PDF]
  • Steps. The carer writes answers to future-planning questions, ideally with the person:
    1. What help with bathing would they prefer?
    2. What do they want to keep doing?
    3. What are their end-of-life wishes?
    4. What home help do they prefer?
  • Example language (illustrative). "While your mum can still tell you, which of these questions could you ask her this week?"
  • Watch for. Avoidance of end-of-life topics. Start with the easier questions, such as activities.

M2.1b. Maintaining intimacy and connection

  • Purpose. Help partners consider how closeness can be kept as dementia progresses. [source: Qatar adaptation PDF]
  • Steps.
    1. The carer reflects on ways to stay close (activities, touch and affection that both are comfortable with).
    2. Discuss these in session. Normalise grief over the changing relationship. [synthesis]
  • Example language (illustrative). "What helps you still feel like husband and wife, not just carer and patient?"
  • Watch for. Consent and capacity issues in sexual relationships, and carer resentment. If either comes up, move to fuller couple or carer therapy and safeguarding advice. [synthesis]

M2.2. Improving communication

  • Purpose. Teach communication skills. The skills named include:
    • checking hearing and sight
    • getting attention respectfully
    • keeping it simple
    • taking the person seriously
    • reading their reactions
    • giving compliments
    • showing compassion
    [source: Qatar adaptation PDF] [uncertain: the lesson lists eight skills, but only these seven were recovered]
  • Steps.
    1. Environment check. Lighting, colour contrast, whether glasses are worn and clean, background noise, and whether hearing aids work. A doctor can check hearing and sight.
    2. Rehearse getting attention: approach from the front, use the person's name, make eye contact. [synthesis on the specific actions]
    3. Use one short message at a time.
    4. Notice the person's facial and body reactions.
  • Example language (illustrative). "Let's role-play: I'm your father watching TV. Show me how you'd get my attention before asking about lunch."
  • Watch for. Rushed, multi-part questions and talking about the person in front of them.

M2.2b. Giving a compliment

  • Purpose. Strengthen positive interaction. [source: Qatar adaptation PDF]
  • Steps.
    1. The carer writes one compliment to give the person.
    2. They give it during the week.
    3. They note the person's reaction.
  • Example language (illustrative). "What's one thing she still does well that you could thank her for today?"
  • Watch for. A carer who can find nothing positive. This may signal depression or burnout; assess. [synthesis]

M2.3. Supported decision-making

  • Purpose. Support the person's decisions in their best interest, for both everyday and complex choices, and prepare ahead. [source: Qatar adaptation PDF]
  • Steps.
    1. The carer reflects on how they currently support decisions.
    2. They record the person's preferences on living arrangements, finances, medical treatment, feeding and fears.
    3. For everyday choices, offer limited options. [source: Bolton Clarke Module 4, "limited choices and yes/no questions"]
  • Example language (illustrative). "Instead of 'what do you want to wear?', try holding up two shirts."
  • Watch for. Carers making all decisions by default, or families disagreeing about decisions. Refer for legal advice on substitute decision-making in your jurisdiction. [synthesis]

M2.4. Involving others

  • Purpose. Involve family and friends, recognise the types of help available, and ask for help effectively. [source: Qatar adaptation PDF]
  • Steps.
    1. Help map. List current helpers under each type: practical, emotional, pleasant activities, information, other.
    2. Wish list. List the help the carer would like.
    3. Ask. Plan what to say to a specific person, and what to say if they agree or refuse.
    4. Rehearse the request in session. [synthesis]
  • Example language (illustrative). "Your brother could do the Thursday shopping. Let's write the exact sentence, and what you'll say if he says he's too busy."
  • Watch for. Beliefs such as "no one can do it like me". Link to M3.3 Thinking differently.

M3.1a. Tension rating

  • Purpose. Let the carer see the effect of each relaxation exercise. [source: Qatar adaptation PDF]
  • Steps. The carer rates tension from 1 to 10 before and after every relaxation exercise.
  • Example language (illustrative). "Before we start: how tense are you right now, 1 to 10? We'll check again after."
  • Watch for. No change across several tries. Use the troubleshooting steps in M3.1i.

M3.1b. Basic breathing (under 5 minutes)

  • Purpose. A quick calming exercise. [source: Qatar adaptation PDF]
  • Steps.
    1. Sit upright with feet flat and one hand on the stomach.
    2. Breathe normally for a few breaths.
    3. Breathe out through the mouth while drawing the stomach in.
    4. Repeat a few times, then stop.
  • Example language (illustrative). "Let the breath out slowly through your mouth and feel your stomach move in under your hand."
  • Watch for. Skip this if breathing is difficult (the manual's own caution).

M3.1c. Mindful breathing (5 minutes)

  • Purpose. Calming plus attention training. [source: Qatar adaptation PDF; Bolton Clarke Module 4]
  • Steps.
    1. Breathe in for a count of 4 and out for a count of 8, watching the stomach rise and fall.
    2. For about a minute, simply observe the breath and your feelings.
    3. Gently return attention when the mind wanders.
  • Example language (illustrative). "In for four… out for eight. If your mind goes to the to-do list, just notice it and come back."
  • Watch for. Light-headedness. Shorten the out-breath count if needed. [synthesis]

M3.1d. Neck movements (5 minutes)

  • Purpose. Release neck and shoulder tension. [source: Qatar adaptation PDF; Bolton Clarke Lesson 3.3]
  • Steps.
    1. Move slowly, breathing with each movement.
    2. Bend the head forward and back: breathe in lifting, out dropping the chin.
    3. Rotate the chin side to side: in at centre, out turning.
    4. Tilt each ear toward its shoulder: in at centre, out tilting.
    5. Repeat each movement 5 times.
  • Example language (illustrative). "Slowly… chin down as you breathe out."
  • Watch for. Neck pain or injury. Skip or reduce the range. [synthesis]

M3.1e. Number counting (5 minutes)

  • Purpose. Slow the breath with a cue word. [source: Qatar adaptation PDF]
  • Steps.
    1. Breathe slowly, about 3 seconds in and 6 seconds out.
    2. Say "relax" on each out-breath while counting down from 20 to 1.
    3. Repeat with eyes closed.
  • Example language (illustrative). "Twenty… relax. Nineteen… relax."
  • Watch for. Losing count is fine. Just restart.

M3.1f. Imagery (5 minutes)

  • Purpose. Relax through pleasant mental images. [source: Qatar adaptation PDF]
  • Steps.
    1. Breathe slowly.
    2. Picture a liked place or people in sensory detail: sights, sounds, smells.
    3. Repeat with eyes closed.
  • Example language (illustrative). "Choose a place you love. What can you hear there?"
  • Watch for. Images of the person before dementia can trigger grief. Offer a neutral place instead. [synthesis]

M3.1g. Progressive muscle relaxation (10 to 15 minutes)

  • Purpose. Deep physical relaxation. [source: Qatar adaptation PDF]
  • Steps.
    1. Tense each muscle group for about 5 seconds, then relax it for about 10 seconds.
    2. Work in order: hands, forearms, upper arms, forehead, eyes and cheeks, mouth and jaw, neck, shoulders, shoulder blades, chest, hips, thighs, calves, feet.
  • Example language (illustrative). "Make a fist… hold… and let go. Notice the difference."
  • Watch for. Avoid this exercise, or the affected muscle group, if the carer has an injury (the manual's caution).

M3.1h. Total stretching (10 minutes)

  • Purpose. Loosen the back and shoulders. [source: Qatar adaptation PDF; Bolton Clarke Module 3]
  • Steps.
    1. Stand or sit and take slow breaths.
    2. Reach the arms up, then out to the sides as if pushing walls outward, then forward.
    3. Roll the shoulders back and forward, and shrug them up and down.
    4. Finish with deep breaths, releasing tension.
  • Example language (illustrative). "Push the walls away… and release."
  • Watch for. Balance problems. Do it seated. [synthesis]

M3.1i. Relaxation habit and troubleshooting

  • Purpose. Make relaxation routine. [source: Bolton Clarke Module 3]
  • Steps.
    1. Set a goal of one exercise a day, optionally at a planned time with a reminder. Short exercises count; the manual's example is breathing while queuing in a shop.
    2. If an exercise doesn't help, try it at another time, practise more, switch exercises or lengthen it.
    3. If it still doesn't help, do a pleasant activity instead.
  • Example language (illustrative). "When in your day is there a two-minute gap you could use?"
  • Watch for. All-or-nothing beliefs ("I don't have 15 minutes"). Point to the 5-minute options.

M3.2a. Choosing pleasant activities

  • Purpose. Counter self-neglect. Caregiving is long-term, and enjoyment sustains it. [source: Bolton Clarke Module 3]
  • Steps. From a checklist (crosswords, TV, visiting friends or family, cooking, music, crafts, reading, napping, shopping, walking, exercise, or the carer's own choice), the carer picks at least 2 activities to do more often.
  • Example language (illustrative). "What did you used to enjoy that has quietly disappeared?"
  • Watch for. Inability to name anything enjoyable. Screen for depression. [synthesis]

M3.2b. Overcoming barriers

  • Purpose. Problem-solve what blocks self-care. [source: Bolton Clarke Module 3]
  • Steps.
    1. Check which of 6 barriers apply: no time, no energy, no money, low mood, physical limitations, guilt.
    2. Match each to a response:
      • short or cheap activities when time or money is tight
      • adapted activities for physical limits
      • for guilt, self-care reframed as part of good care
    3. Practical tips:
      • ask others to take on tasks
      • judge whether a skipped task really matters
      • finish one task before starting another
      • use a calendar
      • get advice from someone trusted
  • Example language (illustrative). "If the guilt could talk, what would it say? And what would you say to a friend in your position?"
  • Watch for. Guilt that won't shift. Take it into M3.3.

M3.2c. Making activities achievable

  • Purpose. Graded activity scheduling. [source: Bolton Clarke Module 3]
  • Steps.
    1. Rate each chosen activity on a 5-point scale from unachievable to very achievable.
    2. Shrink any low-rated activity into a smaller goal.
    3. Start today or tomorrow if possible.
    4. Review it and adjust it to make it more realistic.
  • Example language (illustrative). "A whole afternoon out is a 1. What would make it a 4? Twenty minutes at the café while your sister sits with him?"
  • Watch for. Repeatedly unmet goals. Shrink them further, or arrange respite first.

M3.2d. Pleasant activities together

  • Purpose. Shared enjoyment for both carer and person. [source: Bolton Clarke Module 3]
  • Steps. List activities to share; the manual's example is neighbourhood walks for exercise and fresh air. Schedule one.
  • Example language (illustrative). "What could the two of you still enjoy side by side, even for ten minutes?"
  • Watch for. Activities beyond the person's current ability. See M4.5 on adapting activities.

M3.3. Thinking differently (cognitive reframing)

  • Purpose. Show that feelings follow the carer's interpretation of an event, not the event itself, and replace unhelpful thoughts with realistic, compassionate ones. [source: Bolton Clarke Lesson 3.3 (Australian version; WHO generic text for this lesson is not drawn on)]
  • Steps.
    1. Teach the chain: event, then thought, then feeling, then response.
    2. Review common unhelpful thoughts. They cluster as:
      • doing everything alone, or "no one understands"
      • "I'm a bad carer"
      • "he doesn't care about me anymore"
      • "I must always be available" and "my needs don't count"
      • resentment or pity
      • false hope that the person will get better
      • comparison with others
    3. The carer ticks the unhelpful thoughts they have and the helpful thoughts they already use.
    4. Sort exercise: label statements as helpful or unhelpful, and match them to feelings (upset, lonely, sad, angry, guilty, happy, supported).
    5. Worksheet on a recent upsetting event, with four prompts: the event; the unhelpful thought; a more helpful thought; how that thought might make you feel. Do a second example.
    6. Use the calmer view to choose a response.
  • Example language (illustrative). "When he lost his keys again, what went through your mind? … If a friend thought 'I can never leave him alone again', what might you suggest she tell herself?"
  • Watch for.
    • The lesson cautions that some events, such as hospitalisation or a close friend's death, warrant strong feelings. Do not reframe genuine grief.
    • Signs it is working: the carer generates the alternative thought themselves and reports a different response.
    • Persistent hopelessness or self-blame calls for a depression assessment. [synthesis]

Module 4 content below is from the Australian adaptation (Bolton Clarke Module 4). The lesson titles match the WHO generic version, but details and service names are Australian. [source: Bolton Clarke Module 4; Pinto-Bruno 2019 for WHO titles]

M4.1. More pleasant mealtimes

  • Purpose. Encourage eating and drinking and make meals calm and dignified.
  • Steps.
    1. Involve the person in simple tasks: shopping, preparing food, setting or clearing the table, washing up.
    2. Let them choose food and drinks.
    3. Eat together so they can copy you.
    4. Use a plain plate within easy reach and an uncluttered table. Serve familiar food, say what it is, and limit the number of items.
    5. Improve the lighting, cut noise, and don't rush.
    6. Use aids: contrasting plates, no-spill cups, easy-grip cutlery, bite-sized or finger foods, straws, drinks that are neither too hot nor too cold.
    7. Help the person sit down and leave the table.
  • Example language (illustrative). "Could he butter the bread or fold the napkins? Giving him a job may help more than coaxing."
  • Watch for. Refusal or distress at meals. Check for pain and health causes (M4.1b).

M4.1b. Recognising health problems that affect eating

  • Purpose. Find treatable causes of poor or changed intake.
  • Steps. Match each sign to an action:
    • Toothache or mouth pain. Ask the person to point to it, check for loose teeth or ulcers, and see a dentist or doctor.
    • Ill-fitting dentures. Check the fit and look for red areas.
    • Body pain. Watch for guarding, grimacing or moving less; seek medical help.
    • Constipation. Increase fibre, fluids and activity. See the GP if it persists, and seek urgent help if there has been no bowel movement for more than 3 days.
    • Diarrhoea. See the GP.
    • Medication effects. Contact the GP.
    • Weight loss. Offer favourite and stronger-flavoured foods and nourishing drinks, and ask the GP about supplements.
    • Overeating from forgetting meals. Model eating and keep healthy snacks available.
    • Low appetite with sadness. Eat together, offer smaller portions, and see the GP.
  • Example language (illustrative). "When she pushes the plate away, does she touch her jaw or wince?"
  • Watch for. Sudden change, which calls for medical review.

M4.1c. Hydration timetable

  • Purpose. Prevent dehydration. People with dementia may not notice or express thirst.
  • Steps.
    1. Make a daily drinking timetable covering morning, afternoon, dinner and bedtime.
    2. Count water-rich foods (soup, fruit, ice blocks).
    3. Record what is actually drunk.
    4. Follow medical advice if fluids are restricted (for example, for heart conditions). The adaptation gives a daily fluid guide; use your local guidance.
  • Example language (illustrative). "Let's put a cup next to each meal and one at bedtime, and tick what he actually finishes."
  • Watch for. Confusion, collapse or very low intake. Seek urgent care.

M4.2. Nutrition and safe eating

  • Purpose. Improve nutrition and prevent choking and ingestion of non-food items.
  • Steps.
    1. Offer food when the person is awake, even outside usual mealtimes.
    2. Keep a food and drink diary.
    3. Offer nutritious finger foods and drinks between meals.
    4. For chewing difficulty, offer chopped, minced or soft foods.
    5. Store cleaning products and other non-food items out of reach, and clear non-food items from the table.
    6. Keep the person upright when eating and drinking.
    7. Get speech pathology advice on food textures and thickened drinks.
  • Example language (illustrative). "Have you noticed coughing when she drinks? That's worth a doctor's look."
  • Watch for. Coughing on drinking, difficulty swallowing or fever (possible aspiration pneumonia). Seek urgent medical help.

M4.3. Toileting and continence care

  • Purpose. Reduce accidents, prevent urinary infections, and use continence aids without loss of dignity.
  • Steps.
    1. Environment. Put a toilet sign on the door, use a contrasting seat, keep the path clear, and use night lights (leave the toilet light on). Have a commode at night or a non-spill urinal.
    2. Clothing. Easy pull-on clothes without belts, buttons or zips.
    3. Prompting. Give step-by-step instructions, and take the person to the toilet on a schedule (often every 2 to 3 hours) and before times when accidents usually happen.
    4. Toileting diary. Record trips, accidents and possible causes in hourly blocks across the day and night.
    5. Continence products. Choose pads, briefs or mattress covers for size, absorbency, comfort and cost. Change them promptly, keep genital skin clean, and use barrier cream if needed.
    6. Bladder and bowel health. Regular fluids (unless restricted), a regular bowel routine with enough time on the toilet, and a professional assessment because some causes are treatable.
  • Example language (illustrative). "Let's look at your diary. Accidents cluster mid-morning, so what if you offered the toilet at 10?"
  • Watch for.
    • Never blame, shame or punish accidents.
    • Fever, pain, strong-smelling urine or skin irritation: see the GP or a continence specialist.

M4.4. Personal care (dressing, grooming, mouth care, bathing)

  • Purpose. Keep the person clean and comfortable while preserving independence.
  • Steps.
    1. Keep toiletries together, in order of use, with large-print labels. Use colour-marked taps.
    2. Dressing.
      • Lay out clothes the night before.
      • Offer 2 choices and praise the choice made.
      • Prompt the order of dressing.
      • Choose clothes without belts and shoes without laces.
    3. Mouth care. Toothpaste on the brush, brush in a set order, rinse, clean between teeth daily, use lip balm, check for sores, and clean dentures. Break each task into steps and encourage progress.
    4. Bathing.
      • Bathe at the person's preferred time.
      • Offer a sponge bath when a full bath is hard or unsafe.
      • Use non-slip mats, grab rails and a shower chair; an electric shaver is safer than a razor.
      • Slow the water flow for people afraid of water.
      • Respect preferences, and allow time to get used to new helpers.
    5. Work through the personal care checklist, which covers clothes through to nails.
    6. Seek subsidised home help (in Australia, through My Aged Care).
  • Example language (illustrative). "Instead of 'time for your bath', what if you warmed the towels and asked whether she'd like a wash before or after her tea?"
  • Watch for. Never threaten or punish. Repeated bathing refusal is a behaviour to analyse with the ABC method (M5.1).

M4.5. An enjoyable day

  • Purpose. Keep routines and meaningful activity going as abilities change.
  • Steps.
    1. Keep consistent wake-up and morning sequences, close to the person's lifelong habits.
    2. Explain activities in advance and check the person can manage them.
    3. Increase physical activity if health allows.
    4. Adapt activities: simpler baking, picture books or audiobooks, outings with help from family or neighbours.
    5. For late-afternoon agitation ("sundowning"), plan something meaningful in that slot and limit long naps.
    6. Offer limited choices or yes/no questions.
    7. Display a printed daily routine.
  • Example language (illustrative). "What did his day look like before dementia? Let's keep the tea-then-walk ritual."
  • Watch for. Escalating evening agitation. Seek specialist behaviour support (in Australia, DBMAS).

M5.1. Introduction to behaviour changes: the cycle and ABC analysis

  • Purpose.
    • WHO/Qatar version: learn which behaviour changes are especially stressful, the "cycle of behaviour change", and that "different approaches work at different times". [source: Hamad Module 5 Lesson 1 page] [uncertain: the sub-pages describing the cycle]
    • Australian version: the ABC method plus person-centred care. [source: Bolton Clarke Module 5]
  • Steps (Australian ABC).
    1. Antecedent: what happened just before.
    2. Behaviour: exactly what the person did.
    3. Consequence: the impact on the carer and others.
    4. Look for causes: unmet need (hunger, pain, tiredness, toileting), illness or medication, environment.
    5. Imagine the person's position.
    6. Change the antecedent, your response and the environment.
    7. If one approach fails, try another.
    8. Keep a notebook of triggers.
    9. Ask the GP about sudden changes.
    10. General tips: stay calm, don't argue, distract, use memory aids, make the person comfortable, don't blame yourself or the person, share your feelings, and make time for yourself.
  • Example language (illustrative). "Walk me through the last time it happened: what was going on just before, what exactly did he do, and what happened next?"
  • Watch for.
    • The method is working when the carer starts naming triggers themselves and episodes become less frequent or shorter.
    • Sudden onset suggests delirium or infection; this needs medical review first. [synthesis on the delirium framing]

M5.2. Memory loss

  • Purpose. WHO generic Lesson 5.2. [uncertain: lesson content]
  • Steps. Use only programme-consistent tips found elsewhere: memory aids, written answers to repeated questions, not quizzing or scolding, and accepting harmless forgetting. [source: Bolton Clarke Module 5; Hamad Lesson 7 page] Any further specifics would be [synthesis].
  • Example language (illustrative). "Asking 'don't you remember?' usually adds distress. What could you write down for her instead?"
  • Watch for. Carer frustration, which is a cue for M3.3.

M5.3. Aggression

  • Purpose. Understand and prevent aggressive episodes and respond to them safely. [source: Bolton Clarke Module 5]
  • Steps.
    1. Break a recent episode into its ABC parts.
    2. Allow more time and avoid rushing.
    3. Protect the person's dignity (for example, cover them during care).
    4. Try calming options: favourite music, or a wash with warm towels instead of a bath.
    5. Explain calmly what you are doing.
    6. Try a different helper the person is more comfortable with.
    7. Try several approaches, and ask support groups or Dementia Australia.
    8. Reflection: record the episode and plan changes to the lead-up, your response and the environment.
    9. Relaxation for the carer: neck movements.
  • Example language (illustrative). "He hit out during the shower. What happened in the five minutes before?"
  • Watch for. Carer injury, carer retaliation, or a risk of harm to either person. Make a safety plan, review medically, and consider safeguarding. [synthesis]

M5.4. Depression, anxiety and apathy ("changes in mood or interest" in the Australian version)

  • Purpose. Respond supportively to sadness, fear, agitation, withdrawal and apathy. [source: Bolton Clarke Module 5]
  • Steps.
    1. Offer warmth, gentle touch and reassurance rather than orders or criticism.
    2. Suggest a pleasant activity together.
    3. Redirect agitation with a simple task.
    4. Reminisce about a former job or hobby.
    5. For apathy, structure the day into simple, unhurried steps.
    6. See the GP about persistent low mood.
    7. Relaxation for the carer: 4-8 breathing.
  • Example language (illustrative). "Rather than 'come on, get up', could you sit with her and look at photos from the shop she ran?"
  • Watch for. Persistent low mood in the person with dementia, which needs a depression assessment. The carer's own mood is a separate concern.

M5.5. Difficulty sleeping

  • Purpose. Help the person fall and stay asleep, and protect the carer's sleep. [source: Bolton Clarke Module 5]
  • Steps.
    1. During the day. Keep the person active, limit caffeine and evening fluids, make lunch the main meal, and keep naps short.
    2. Bedtime. A comfortable bedroom, night lights, soothing music, a consistent routine, and lifelong sleep habits kept.
    3. Night waking. Check for toileting, hunger, thirst or pain. Reassure calmly and offer a favourite object. Don't argue, scold or physically move the person.
    4. Keep a sleep diary to find patterns (for example, late coffee).
    5. Arrange relief so the carer can sleep.
    6. The adaptation cautions against sleeping pills because of confusion; a doctor should review them.
  • Example language (illustrative). "Let's track a week of sleep and drinks and see what lines up."
  • Watch for. Frequent night waking. Medical review.

M5.6. Delusions and hallucinations

  • Purpose. Respond with comfort rather than argument. [source: Bolton Clarke Module 5]
  • Steps.
    1. Stay calm and reassure the person they are safe.
    2. Don't argue or correct harshly. Acknowledge the feeling behind the belief.
    3. Distract the person or move to another area.
    4. With misidentification, don't confirm the false belief, but acknowledge the person they are thinking of.
    5. Check for environmental causes: shadows, glare, reflections.
    6. Pleasant hallucinations may be left alone.
    7. Review medication with the doctor.
  • Example language (illustrative). "Rather than 'nobody stole your purse', try 'that's worrying, let's look together.'"
  • Watch for. Distressing or new-onset psychotic symptoms. Medical review.

M5.7. Repetitive behaviour

  • Purpose. Reduce distress from repeated questions and actions. [source: Hamad Lesson 7 page]
  • Steps.
    1. Work through the vignette. A son minding his father faces repeated questions about meals and his absent mother, and ends up snapping at him.
    2. The lesson asks the carer to weigh these options:
      • stay calm and reassure that the family member will return
      • engage the person in an activity
      • write down answers to reread
      • accept harmless repetition
      • offer a snack or drink
      • versus scolding, quizzing or walking away
    3. Activity: the carer picks the repetitive behaviour that is most stressful, notes what could reduce it, and notes how to change their own response.
  • Example language (illustrative). "He may be asking because he's anxious she's gone. What might reassure the feeling, not just answer the question?"
  • Watch for. Carer irritation, which is a cue for relaxation and M3.3.

M5.8. Walking and getting lost

  • Purpose. Understand walking and reduce the risk of harm. [source: Bolton Clarke Module 5]
  • Steps.
    1. Identify the reason: exercise, habit, boredom, energy, pain or toileting needs, stress or hallucinations, feeling lost, searching for someone, seeking purpose, confusion about time, overstimulation, or unfamiliar surroundings.
    2. Redirect calmly rather than yelling or blocking.
    3. Schedule walks at the usual times and offer meaningful tasks.
    4. Keep a log of when and where walking happens.
    5. Safety measures: ID or a medical-alert bracelet, a recent photo, secured or camouflaged doors, and avoiding busy, confusing places.
  • Example language (illustrative). "He heads for the door at four, when he used to finish work. What could 'finishing work' look like at home?"
  • Watch for. The adaptation says never lock a person with dementia in alone. Get-lost incidents need an emergency plan.

M5.9. Changes in judgement

  • Purpose. Manage disinhibited behaviour, finances, driving and sexual remarks. [source: Bolton Clarke Module 5]
  • Steps.
    1. Public behaviour. Stay calm, reassure, accept harmless behaviour, and give a brief apology to others. Avoid restraint and embarrassing the person.
    2. Finances. Open mail together and prompt one bill at a time. The person chooses a trusted helper.
    3. Driving. Offer lifts and alternative transport, and suggest a GP discussion. Ideally the person makes the decision to stop.
    4. Sexual remarks. State calmly that the behaviour is unacceptable and clarify your role. Adjust care routines for privacy (sponge baths, letting the person do more themselves, towel cover). Avoid shaming. See a doctor if it persists, and consider another carer.
  • Example language (illustrative). "Saying calmly, 'I'm your daughter, Dad,' and then moving on works better than a lecture."
  • Watch for. Financial exploitation by others, unsafe driving, or sexual behaviour towards others. These may carry legal or safeguarding duties. [synthesis]

M5.10. Putting it all together

  • Purpose. WHO generic closing lesson integrating Module 5. [uncertain]
  • Steps (synthesis). Review the ABC notebooks and the strategies that worked. Pick the one remaining behaviour that is most stressful. Write a short personal plan covering prevention, response, self-care and who to call.
  • Example language (illustrative). "Looking back over your notes, what's your own rule of thumb now?"
  • Watch for. Continuing high strain, which suggests referral beyond self-help.

5. Handling problems

Source-based guidance is tagged. Everything else is [synthesis]; the iSupport materials opened say little about a professional's role beyond the e-coach.

  • Non-adherence and drop-out (the commonest problem in self-help).
    • Use the e-coach rhythm: contact at the start, at 1 month and at 2 months, with encouragement and clarification. [source: Pinto-Bruno 2019]
    • Reduce the dose to one lesson on the current hardest problem. Relaxation can be done in under 5 minutes, and "a brief exercise still helps". [source: Qatar adaptation PDF; Bolton Clarke Module 3]
    • Switch to the printed manual, or let a relative read lessons aloud, when screens are the barrier. [synthesis]
  • "No time for myself", guilt, self-sacrifice.
    • Work through the 6-barrier list and guilt reframe (M3.2b), the achievability rating (M3.2c) and Thinking differently (M3.3). [source: Bolton Clarke Module 3]
    • Make a specific request for help (M2.4) the session's concrete output. [synthesis]
  • Relaxation doesn't work.
    • Try another time, more practice, a different exercise or a longer exercise; otherwise do a pleasant activity instead. [source: Bolton Clarke Module 3]
    • If breathing exercises raise anxiety, switch to movement-based exercises (neck, stretching). [synthesis]
  • Behaviour strategy fails.
    • "Different approaches work at different times" [source: Hamad Module 5 L1 page]. Try another approach; good and bad days are normal. [source: Bolton Clarke Module 5]
    • Redo the ABC with finer detail.
    • Check pain, infection, constipation, sleep and medication with the GP.
    • Refer to specialist dementia behaviour services where available (e.g. DBMAS in Australia). [source: Bolton Clarke Modules 4 and 5]
  • Carer overwhelm or crisis. [synthesis]
    • If the carer reports being unable to cope, use local crisis lines (the Australian version lists Lifeline). [source: Bolton Clarke Lesson 3.3]
    • Assess carer depression, anxiety and suicide risk with standard risk assessment. Ask directly about thoughts of suicide or of ending both lives, which is a recognised risk in exhausted carers.
    • Build a safety plan, arrange emergency respite, and move from self-help to individual treatment.
  • Risk of harm to the person with dementia. [synthesis]
    • Signs: shouting, rough handling, locking the person in (the adaptation says never lock them in alone), withholding food or fluids, financial misuse.
    • Discuss non-judgementally. Follow local adult safeguarding and reporting duties. Increase practical support.
    • Present the programme's "never threaten or punish" rules as a shared standard, not an accusation.
  • Aggression with injury risk. [synthesis, building on M5.3]
    • The carer should step back and give space, keep exits clear and phone for help if in danger.
    • Arrange medical review for sudden-onset aggression.
    • Agree a written plan for next time.
  • Unresolved grief or anticipatory loss.
    • Do not force reframing. The programme itself says some events warrant strong feelings. [source: Bolton Clarke Lesson 3.3]
    • Offer grief-focused carer counselling alongside the lessons. [synthesis]
  • Rupture with the clinician or coach ("you don't understand what it's like"). [synthesis]
    • Validate first.
    • Acknowledge that the generic lesson examples may not fit the carer's situation.
    • Invite the carer to say which advice felt unrealistic, and adapt it with them.
    • Avoid sounding like the lesson's "correct answer".
  • Family conflict about care or decisions. [synthesis]
    • Use M2.3 and M2.4 to hold a structured family conversation.
    • Refer for legal advice on decision-making authority, and for family therapy if conflict is entrenched.
  • Cultural mismatch.
    • Use the national adaptation, or adapt names, foods, activities and services as the WHO adaptation process does. [source: Pinto-Bruno 2019; WHO iSupport team page]
    • In collectivist families, frame self-care as protecting the family's ability to care. [synthesis]
  • Low literacy, sensory impairment or carer cognitive problems. [synthesis]
    • Deliver lessons orally in session.
    • Use the iSupport Lite posters as visual summaries.
    • Screen older spousal carers for their own health needs.
  • Late-stage dementia, placement and end of life. [synthesis]
    • The lessons focus on home care.
    • Use the planning-ahead questions (M2.1) and the swallowing warning signs (M4.2) to open discussions about palliative care and residential care.
    • Refer to palliative services.
  • The person with dementia refuses care.
    • Use the bathing and personal-care adaptations (preferred time, sponge bath, a different helper, warm towels) and ABC analysis. [source: Bolton Clarke Modules 4 and 5]
    • Never threaten. [source: Bolton Clarke Module 4]
  • Scope limits. [synthesis]
    • iSupport is not designed for carers with major psychiatric disorder, active substance misuse or high-conflict abusive relationships. Offer it as an adjunct and provide or refer for specialist treatment.

Sources

Sources:

Books and manuals cited:

  • World Health Organization (2019). iSupport for Dementia: Training and support manual for carers of people with dementia. Geneva: WHO. ISBN 978-92-4-151586-3.
  • Flinders University (2022). Australian iSupport for Dementia: Training and support manual for carers of people with dementia. ISBN 9781925562750.

Further reading (not drawn on): the WHO iSupport adaptation and implementation guide, the WHO generic text of Module 3 L3, Modules 4 and 5, and Module 5 L2 and L10. Content for these is marked [uncertain] or drawn from the Australian adaptation.

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