Sclérose en plaques en établissement : activités, supports et aménagements concrets à mettre en place
En établissement, la sclérose en plaques ne se joue pas seulement pendant les temps de rééducation. Elle se joue dans les creux de la journée : le moment où l'on attend le repas, l'heure calme de l'après-midi, le trajet jusqu'à la salle d'activité. C'est précisément dans ces intervalles que se construit — ou que se perd — l'autonomie. Cet article rassemble des activités, des supports et des aménagements concrets pour la sclérose en plaques en établissement, pensés pour être mis en place dès demain, avec le matériel dont on dispose déjà et sans transformer chaque instant en séance de travail.
Dans cet article
La formation associée
Ce n'est pas un cours théorique. C'est une boîte à outils : quatorze activités décrites précisément, une organisation de journée et de semaine, l'aménagement des espaces pièce par pièce, les outils gratuits à imprimer et le rôle du numérique. Que vous soyez soignant, animateur, ou proche d'une personne accueillie, vous y trouverez de quoi agir tout de suite, en tenant compte des deux réalités qui commandent tout dans la SEP : la fatigue et la sensibilité à la chaleur.
L'essentiel en 30 secondes
Une stimulation utile dans la sclérose en plaques repose sur quatre principes : court, régulier, à la bonne difficulté, et respectueux de la fatigue. On construit autour des capacités du jour, pas autour d'un programme figé.
- La fatigue commande — on planifie l'activité exigeante quand l'énergie est maximale, souvent en fin de matinée, et on s'arrête avant l'épuisement, pas après.
- La chaleur limite — un environnement frais protège les capacités ; la chaleur peut faire réapparaître temporairement des symptômes.
- Le bon niveau — la personne doit réussir la plupart des essais ; l'échec répété fait abandonner.
- La trace écrite — noter chaque jour rend visibles des évolutions que la mémoire d'équipe efface, et facilite la transmission.
- L'environnement — quelques aménagements simples des espaces communs et de la chambre facilitent la participation et préviennent les chutes.
Sclérose en plaques en établissement : les repères avant toute activité
Multiple sclerosis is a neurological disease whose progression and symptoms vary greatly from one person to another, and sometimes from one day to the next in the same person. In an institution, this imposes a simple rule: we do not follow a program, we follow a person. The guidelines below apply before each activity, whatever it may be.
Start with the day's abilities
A person capable of an exercise on Monday may not be on Thursday, without anything worsening. We ask, we observe, and we adjust without comment.
Aim for success
The person must succeed in most of their attempts. If everything is too easy, we increase the difficulty; if failure repeats, we decrease it immediately.
Short rather than long
Ten to twenty minutes is sufficient. We stop before fatigue, never when it has set in: a session that ends poorly discourages the next one.
Note down every time
One line is enough: what was done, what caused fatigue, what worked well. This makes progress visible and smooths the transition between teams.
The activities that follow are daily activities, not medical protocols. Some may be discouraged depending on the impairments: swallowing disorders, significant spasticity, balance disorders, major fatigue, cognitive disorders. Refer to the personalized project and consult the doctor, physiotherapist, occupational therapist, or speech therapist who follows the person: they are the ones who indicate what is suitable. Observe, report, apply the instructions, and refer to the healthcare professional for any diagnosis or prognosis.
Fatigue and heat: the framework to respect
Two realities condition everything else. Ignoring them means proposing activities that fail and discourage; respecting them means multiplying the chances that participation becomes a pleasure.
Fatigue is one of the most frequently reported symptoms in multiple sclerosis: the ARSEP Foundation and patient associations describe it as an exhaustion that is not proportional to the effort exerted and that rest does not always suffice to erase. Concretely, in an institution, this means three things. We schedule the most demanding activity when energy is highest—often late morning, sometimes differently depending on the person. We break it down: three ten-minute sessions are better than one thirty-minute session. And we ensure a real quiet time in the afternoon, without screens or stimulation, which is part of the program just like the activities.
Heat sensitivity is the other point of vigilance: in many people, an increase in body or environmental temperature can temporarily bring back symptoms (blurred vision, heavy legs, increased fatigue). This phenomenon is reversible, but it hinders activity. Therefore, we ensure a temperate environment, avoid the hottest times of the day in summer, offer cool water, and do not hesitate to postpone or shorten when it is hot.
Three questions in ten seconds: has the person slept well and recovered? Is the room cool? Do they want to, right now? If the answer is no, we lighten or reschedule. An activity canceled for good reasons is better than an activity endured.
Motor skills, balance and daily gestures
These activities maintain mobility, coordination and confidence. They complement physiotherapy and occupational therapy, they never replace them. Ask the rehabilitation team which ones best serve the current objectives, and always adapt to the day's level of fatigue.
Folding and sorting laundry
- Objective — coordination of both hands, fine motor skills, sitting posture, participation in a useful task.
- Materials and duration — a basket of clean and light laundry, 10 minutes, sitting at a stable table.
- Procedure — start with large pieces that are easy to grasp: towels, dishcloths. The less skilled hand holds, the more skilled hand folds. Let the person do it, do not do it for them.
- Easier — fold in half only, with thick towels that slide less.
- More difficult — pairing socks, folding clothes into quarters, sorting by color.
- Sign that it works — the less skilled hand participates spontaneously, without being asked.
Seated cooking workshop
- Objective — grip strength, hand-eye coordination, planning a task in steps.
- Materials and duration — a non-slip board (or a damp cloth underneath), utensils with a wide handle, simple ingredients, 15 minutes, always seated.
- Procedure — wash, mix, garnish: prepare a fruit salad, set up jars, decorate a cake. The person performs; the companion prepares and secures the workspace.
- Easier — a single step, large movements (mixing, pouring).
- More difficult — follow a recipe displayed in four steps, without oral reminders.
- Sign that it works — movements become more precise, fatigue arrives later than at the beginning.
Secure balance course
- Objective — balance, weight transfer, confidence in movement.
- Materials and duration — a clear corridor, a support bar or handrail, usual technical aid, 5 to 10 minutes.
- Procedure — the same route every day, with a support point identified halfway. Move slowly, keeping the gaze on the horizon rather than on the feet. A companion always stays within reach.
- Easier — a short round trip with support possible all the way, several times a day.
- More difficult — navigating around a light obstacle, or walking while holding a short conversation, which increases the load.
- Sign that it works — the same route requires fewer breaks, the gaze is lifted.
Gentle exercise in a chair
- Objective — joint range, muscle awakening, body awareness, without putting oneself in danger.
- Materials and duration — a stable chair, possibly a small light ball or a scarf, 10 minutes.
- Procedure — slow and wide movements of the arms, hands, ankles, following a simple instruction and a regular rhythm. Strictly respect the ranges indicated by the physiotherapist and never force.
- Easier — movements of the upper body only, by imitation.
- More difficult — chaining a small memorized sequence of three movements.
- Sign that it works — movements become wider and smoother over the days.
❌ To avoid : pushing "to progress" when the person shows signs of fatigue (slower words, less precise gestures, blurred vision). In MS, too much effort does not gain ground, it loses it for the rest of the day.
Memory, attention, and processing speed
Multiple sclerosis can be accompanied by cognitive disorders, particularly attention, working memory, and a slowdown in information processing. This does not mean giving up : it means allowing more time, reducing distractions, and valuing every success.
The reconstructed list
- Objective — working memory, categorization, memorization strategies.
- Material and duration — paper, pencil, 10 minutes, in a quiet space.
- Procedure — state a shopping list of five or six items, talk about something else for a minute, then the person recalls. Allow as much time as needed, without giving the answer too quickly.
- Easier — three items, immediate recall.
- More difficult — ten items to group by section before recalling.
- Sign that it works — the person invents their own tricks (grouping, associating, visualizing).
The adapted pairs game
- Objective — visual attention, memory, space scanning.
- Material and duration — a deck of cards or large printed images, 10 minutes.
- Procedure — lay the cards face down, turn over two cards at a time to find pairs. Limit the number of cards according to fatigue and maintain a pace without time pressure.
- Easier — six cards, in a single row, well contrasted.
- More difficult — twenty cards, widely spread on the table.
- Sign that it works — the number of attempts needed decreases from week to week.
The agenda for the next day
- Objective — prospective memory, temporal markers, sense of control over one's day.
- Material and duration — a large box agenda or a wipeable board in the room, 5 minutes each evening.
- Procedure — together note the two or three appointments or activities for the next day, then check off the next evening what took place.
- Easier — the caregiver writes, the person reads aloud.
- More difficult — the person writes alone and anticipates the week.
- Sign that it works — they consult their agenda spontaneously during the day.
The sorting by themes
- Objective — sustained attention, mental flexibility, reasoning, with a concrete support.
- Material and duration — a set of image cards (food, animals, objects), or magazine photos, 10 to 15 minutes.
- Procedure — sort the images according to an announced criterion (what can be eaten / what cannot be eaten), then change the criterion (by color, by size) to work on flexibility.
- Easier — two very different categories, few cards.
- More difficult — three categories, or find the common criterion oneself.
- Sign that it works — the change of instruction is followed without confusion.
Understanding MS to adjust each activity at the right time
Knowing why fatigue and heat weigh so much, spotting the signs of a bad day, adapting one's posture : the DYNSEO training "Multiple Sclerosis in Institutions" dedicates short and concrete lessons to this. 32 lessons, 100 % online, unlimited access, at your own pace. Certified organization Qualiopi (N° 11757351875), certificate of completion.
Discover the training — 20 €Language, communication and social connection
Depending on the impairments, MS can affect articulation, breath, or the rhythm of speech. These activities maintain communication and connection; they complement speech therapy when it exists, without replacing it. Ask the speech therapist what best serves the current objectives.
Reading in two voices
- Objective — articulation, breath, comprehension, and pleasure of reading.
- Material and duration — a short article or a text in large print, 10 minutes.
- Procedure — the companion reads one sentence, the person reads the next. We stop at the end of a paragraph, never in the middle of an effort. We do not correct every mistake.
- Easier — the person only reads the last word of each sentence.
- Harder — summarize the paragraph in one sentence after reading.
- Sign that it works — the sentences read become longer, the pace becomes regular.
Guided memory workshop
- Objective — old memory, spontaneous speech, valuing life history.
- Material and duration — objects, photos, or period music, 15 minutes, in a small group or individually.
- Procedure — we present a trigger (a song, a photo, an everyday object from the past) and let whatever comes come, without correcting or questioning in rapid succession. An open question is enough: “What does this remind you of?”
- Easier — a single very familiar trigger, short time.
- Harder — build a small chronological narrative from several memories.
- Sign that it works — speech becomes more fluid, the exchange turns into a conversation.
Prepared connection with loved ones
- Objective — maintain family ties and regain confidence in remote exchanges.
- Material and duration — a phone or tablet, a sheet with two or three prepared sentences, 5 to 10 minutes.
- Procedure — we choose a kind and informed interlocutor, we write together what we want to say to them, then we call on speakerphone with the companion next to us, without intervening.
- Easier — a recorded voice message that can be replayed and redone.
- Harder — a call without a sheet, then a video call.
- Sign that it works — the person asks to contact a loved one themselves.
Well-being, mood, and sensory stimulation
MS can weigh on mood, and mood conditions adherence to everything else. These three activities do not aim for any performance: they maintain pleasure, calmness, and the feeling of existing as a person, not as a patient. For any lasting sadness, withdrawal, or loss of momentum, we talk to the doctor or psychologist: moral suffering can be treated.
Personal playlist
- Objective — mood, evocation of memories, relaxation. Familiar melodies often remain very accessible.
- Material and duration — a speaker or headphones, a selection of music from the person's ages 15-30, 15 minutes.
- Procedure — listen together, then let speech or silence come. Many people hum, keep the beat, or recount a memory.
- Variant — associate a photo from the same era with each piece.
- Sign that it works — the face relaxes, the person asks for “their” music.
The calming sensory time
- Objective — relaxation, grounding in the moment, reduction of tension and mental fatigue.
- Materials and duration — soft materials to touch, scents to smell (with the team's agreement), dim light, 10 minutes.
- Procedure — offer, without imposing, a slow exploration: touch a fabric, smell a familiar scent, listen to soft sounds. Respect refusals, which are also a form of choice.
- Easier — only one sense engaged at a time.
- Harder — associate an emotion or memory with each sensation and name it.
- Sign that it works — breathing slows down, the person extends the moment themselves.
The adapted creative workshop
- Objective — expression, pleasure of doing, pride in a visible result, fine coordination.
- Materials and duration — simple materials to handle (large markers, gluing, modeling clay, indoor gardening), 15 to 20 minutes.
- Procedure — a short project with a concrete result on the same day. Adapt tools for grip (thick handles, non-slip supports) and value the gesture more than perfection.
- Easier — participate in only one step of the collective project.
- Harder — carry out a small project from start to finish over several sessions.
- Sign that it works — the person shows their work, talks about it, wants to do it again.
A typical day and a typical week
The classic trap: wanting to offer everything every day. One activity per domain and per day is more than enough, provided it takes place and respects the available energy. Here is a framework that places demands when energy is high and protects the calm time of the afternoon.
| Moment | What we put in it | Duration |
|---|---|---|
| End of morning | The most demanding activity of the day — motor skills or cognition | 15-20 min |
| Before the meal | A time for connection: reading aloud, exchange, prepared call | 10 min |
| Beginning of afternoon | Mandatory quiet time, without screens or stimulation | 45-60 min |
| Mid-afternoon | Gentle digital session or board game | 15 min |
| End of afternoon | A pleasure activity — music, creative workshop, sensory | 15-20 min |
| Evening | Agenda for the next day, in the room | 5 min |
Throughout the week, we rotate the main focuses to vary the stimuli without overloading, and we keep one truly free day. Rest is not an absence of program: it is part of the program.
| Day | Main focus of the day |
|---|---|
| Monday | Motor skills — laundry, gentle gymnastics |
| Tuesday | Cognition — reconstructed list, pairs game |
| Wednesday | Communication — reading aloud, memory workshop |
| Thursday | Independence — cooking workshop from start to finish |
| Friday | Social connection — prepared call or visit, group game |
| Saturday | Pleasure — music, creative workshop, short outing |
| Sunday | Nothing imposed. Rest is part of care. |
This typical week is a base, not an obligation. On a day of great fatigue, we only keep the pleasure activity at the end of the day and the evening agenda. We never catch up: we simply resume the next day where we left off.
Arranging the establishment's spaces
A well-thought-out environment does half the work: it reduces unnecessary fatigue, secures movements, and makes participation possible. Many adjustments cost almost nothing. For others, an assessment by the occupational therapist is the best investment.
| Space | What is problematic | What we change |
|---|---|---|
| Room | Bed too low, switch far away, nighttime getting up | Adjusted bed height, switch accessible from the bed, illuminated path to the toilet |
| Bathroom | Wet floor, prolonged standing, transfers | Grab bars fixed to the wall, non-slip mat, shower seat, equipment approved by the occupational therapist |
| Activity room | Heat, background noise, insufficient light | Temperature-controlled and ventilated room, noise sources turned off during the activity, enhanced lighting without glare |
| Dining room | Heavy dishes, table unsuitable for wheelchair | Lightweight dishes and ergonomic cutlery, table at the right height, quiet place for fatigable individuals |
| Hallways and circulation | Carpets, clutter, long distances | Clear and non-slip floor, continuous handrails, regular resting benches along the routes |
| All spaces | Fatigue related to movement, disorientation | Bring activities closer to the rooms when possible, clear and contrasting visual markers |
Prefer materials in large print, with high contrast (dark text on light background), without information overload on the same page. Space the lines, limit the number of items per exercise, and always allow the person to take a break as soon as their vision blurs: this is often a sign of fatigue, not disinterest.
Free printable resources
These DYNSEO tools are freely downloadable and printable from the catalog of free tools. Three of them are enough to structure the entire routine described here and to facilitate communication between the team and the family.
- Progress tracking chart (visual) — one mark per day, one line per activity. This is the resource that makes progress visible and reignites motivation when it wanes. Displayed in the room, it also becomes a useful time marker.
- Session tracking sheet — what was worked on, what caused fatigue, what worked well. To be filled out in one minute after each activity, it ensures continuity between caregivers and days.
- Communication notebook — to convey your observations to the care team, the doctor, or the family without forgetting anything. It links what is seen daily with care decisions.
- Skills tracking chart — to visualize over several weeks what is maintained, what is progressing, and what needs to be adapted.
- Word notebook — a communication tool to personalize with familiar photos, useful as soon as speech becomes fatigued.
The principle is always the same: write little, but write every day. A one-line observation, noted at the moment, is worth more than a long report reconstructed from memory a week later.
The role of digital technology and the JOE application
A tablet does not replace rehabilitation or real activities. It provides two things that paper does not: automatic adjustment of the difficulty level, which prevents failure as well as boredom, and a record of results that objectively reflects progress without discussion.
For the adult affected by multiple sclerosis, the JOE application is the reference tool: short games of memory, attention, logic, and language, with an adaptable level. It is used in brief sequences, at fixed times, like a ritual.
| Application | Pour qui | Usage type |
|---|---|---|
| JOE | Adulte concerné par la SEP | 15 minutes par jour, 2 à 3 jeux de mémoire, attention et logique |
| EDITH | Personne âgée, interface simplifiée | Même principe, avec une navigation pensée pour les seniors |
| MON DICO | Communication difficile, support visuel | Aide à la communication au quotidien |
Le bon dosage : une quinzaine de minutes par jour, à heure fixe, plutôt qu'une longue session hebdomadaire. On garde l'écran hors de la fin de soirée, qui perturbe un sommeil parfois déjà fragile, et on s'arrête à la fin du temps prévu, même quand tout se passe bien. Pour compléter, le catalogue de tests cognitifs permet de situer un point de départ, à interpréter toujours avec un professionnel.
Les 5 erreurs à éviter
- Ignorer la fatigue. Continuer « pour finir » quand les signes de fatigue apparaissent, c'est gâcher la séance et compromettre le reste de la journée. Dans la SEP, on arrête avant, jamais après.
- Négliger la chaleur. Une salle surchauffée, un créneau en pleine chaleur d'été : et des symptômes réapparaissent, faussant totalement l'activité. Un environnement frais fait partie du dispositif.
- Faire à la place. Par gentillesse ou par gain de temps, on prive la personne de ce qu'elle peut encore faire. C'est une cause majeure de perte d'autonomie évitable.
- Choisir un niveau trop difficile. L'échec répété décourage et fait renoncer. Mieux vaut trop facile pendant une semaine que trop dur pendant deux jours.
- Ne rien noter. Sans trace écrite, les évolutions lentes deviennent invisibles, la transmission se perd entre équipes, et l'on conclut à tort que rien ne bouge.
Pour aller plus loin
Guide de fondSclérose en plaques en établissement : le guide complet pour comprendre ce qui se joue
Aides & interlocuteursÀ qui s'adresser, quelles aides et comment tenir dans la durée
La formationProgramme, contenu et à qui s'adresse la formation SEP de DYNSEO
Questions fréquentes
À quelle fréquence proposer ces activités ?
Chaque jour, mais peu à la fois. Une seule activité par domaine et par jour suffit, à condition qu'elle ait vraiment lieu et qu'elle respecte l'énergie disponible. La régularité compte davantage que l'intensité : quinze minutes tous les jours nourrissent mieux les capacités qu'une longue séance hebdomadaire. Les jours de grande fatigue, on ne supprime pas tout : on garde une activité plaisir, très courte, pour protéger le rituel lui-même. Et l'on prévoit au moins un jour vraiment libre par semaine, car le repos fait partie du soin dans la sclérose en plaques.
Combien de temps doit durer une séance ?
Entre dix et vingt minutes pour une activité donnée, et rarement plus d'une heure au total sur la journée, en séquences fractionnées. Au-delà, la fatigue caractéristique de la SEP prend le dessus et l'activité devient contre-productive. La règle d'or : on s'arrête avant que la fatigue s'installe, pas quand elle est déjà là. Observez les signes discrets — mots plus lents, gestes moins précis, vision qui se trouble — et concluez la séance sur une réussite. Une activité qui finit bien donne envie de recommencer ; une activité poussée trop loin décourage la suivante.
Comment motiver une personne qui refuse ?
Trois leviers fonctionnent mieux que l'insistance. D'abord, baisser la difficulté jusqu'à obtenir des réussites, car c'est souvent la peur de l'échec qui bloque. Ensuite, remplacer l'exercice par une activité qui a du sens pour la personne : cuisiner, écouter sa musique, appeler un proche. Enfin, rendre le progrès visible avec un tableau de suivi affiché. Négociez la durée plutôt que le principe : « on essaie cinq minutes et on arrête si vous voulez » obtient presque toujours plus. Et respectez le refus du jour : il peut simplement signaler une fatigue qu'il vaut mieux écouter.
Quel matériel faut-il vraiment ?
Presque rien de spécialisé. La plupart des activités reposent sur ce dont dispose déjà l'établissement : du linge, des ustensiles de cuisine, des cartes, des photos, de la musique, un agenda. Trois investissements utiles font la différence : des supports antidérapants et des ustensiles à poignée large pour la préhension, des documents en gros caractères très contrastés pour la vision, et une tablette pour les jeux qui ajustent seuls la difficulté. Les supports de suivi DYNSEO sont gratuits à imprimer. Pour les aménagements de sécurité (barres d'appui, siège de douche), c'est l'ergothérapeute qui indique le matériel adapté à chaque personne.
Ces activités conviennent-elles à tous les âges ?
La sclérose en plaques débute souvent chez l'adulte jeune, mais elle concerne des personnes de tous âges en établissement. Les activités présentées ici s'adaptent en modulant la difficulté, la durée et le thème, jamais l'exigence de respect de la personne. Pour un adulte jeune, on privilégie des supports en phase avec ses centres d'intérêt et son histoire ; pour une personne plus âgée, on peut simplifier l'interface numérique avec une application comme EDITH. Dans tous les cas, on part de ce qui a du sens pour la personne. Pour toute question sur l'évolution ou les capacités, référez-vous au médecin qui la suit.
Ces activités sont des propositions générales du quotidien. Elles ne remplacent ni la rééducation prescrite, ni un avis médical. Faites valider ce qui convient à chaque personne par le médecin et l'équipe de rééducation (kinésithérapeute, ergothérapeute, orthophoniste) qui la suivent. En cas de symptôme nouveau ou d'urgence, contactez les services d'urgence de votre pays.
Mettre en place ces activités, supports et aménagements pour la sclérose en plaques en établissement
La formation DYNSEO « Sclérose en plaques en établissement : comprendre la maladie et adapter sa pratique professionnelle » reprend tout cela pas à pas : comprendre la maladie, ajuster les activités à la fatigue, aménager l'environnement, accompagner sur la durée. 32 leçons, 100 % en ligne, accès illimité, à votre rythme. Organisme certifié Qualiopi (N° 11757351875), attestation de fin de formation.
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