This programme is a treatment manual written for mental health professionals. It assumes clinical training, experience of working with older people and with families, and a supervision framework. It replaces neither your clinical judgement nor your professional responsibility. It makes no aetiological diagnosis: that belongs to a medical and neuropsychological assessment. Diagnostic criteria are reformulated in our own words and never reproduced: refer to the original manuals for the wording itself. It is not written for the people concerned or for those close to them: if someone is in danger today — abuse, a person being put at risk, suicidal thoughts in the carer — contact your country's emergency services.
1. The programme at a glance
Indication. Two audiences, one programme. First the family carer — spouse, child, brother, sister, close friend — of a person with a major neurocognitive disorder, whatever its cause, living at home or newly moved into a care home. Then the person affected, at the mild stage, while they can still engage in individual work.
Reference model. For the carer, a structured individual coping strategy programme. The best evaluated is START (Livingston et al., 2013): eight sessions, an effect on the carer's anxiety and depression that holds at two years and then at six years (Livingston, Barber et al., 2014; Livingston et al., 2020). Its published components are used here, without its materials. For behaviours, the structured non-drug approach recommended by NICE (2018) and described by Kales et al. (2014). For the person, the principles of cognitive stimulation (Spector et al., 2003), of goal-oriented cognitive rehabilitation (Clare et al., 2019) and of adapted cognitive behavioural therapies (Orgeta et al., 2022).
Format. Eight one-hour individual sessions with the carer, weekly, at the clinic or at home. Two booster sessions, at one month and at three months, and an extra session each time the illness changes stage. The module for the person affected has five sessions of 30 to 45 minutes, held before or alongside, with the carer joining the end of each session.
Target mechanism. In the carer: replacing helplessness with strategies, understanding what brings on difficult behaviours, revising the thoughts that exhaust, and putting back into the week moments that are not care. In the person: compensating rather than struggling on, keeping activities that mean something to them, treating anxiety and sadness, and deciding about later while they still can.
| Session |
Subject |
Session output |
| 1 |
The carer, their load, their risks |
Baseline measures, open record |
| 2 |
Understanding the illness and the behaviours |
One behaviour described precisely |
| 3 |
A plan for one behaviour |
Written plan, to be tested during the week |
| 4 |
Communicating differently |
Two changes, one request for help |
| 5 |
Guilt, anger, grieving the living |
One thought examined in writing |
| 6 |
Moments that count |
Shared activities and time for oneself, dated |
| 7 |
Preparing for the future |
Steps listed and dated |
| 8 |
Keeping going over time |
Maintenance plan, measures repeated |
| P1 |
What the person knows and what they want |
Two or three goals of their own |
| P2 |
The aids that compensate |
One aid set up and tried |
| P3 |
What feels good and keeps you active |
Chosen activities, referral to a group |
| P4 |
Worry and sadness |
A simple plan, with the carer |
| P5 |
What I want for later |
Wishes written down with the person |
What the person takes away. Nine printable worksheets, listed in section 40. Seven for the carer: my situation as a carer, what happens at home, my plan for one behaviour, speaking differently, what I tell myself, moments that count, preparing for what comes next. Two for the person affected, written in short sentences: my day and my landmarks, what matters to me.
What sets this programme apart from the other manuals on this site. Three things. It has two patients, and the first is not the one with the diagnosis. It does not aim to make symptoms disappear — the illness progresses, and the programme says so from the first session — but to reduce the suffering around it. And it puts into the body of the text questions that psychotherapy manuals usually leave to others: abuse, driving, decision-making capacity, end of life.
2. Before starting
Who this programme is for
This text is written for psychologists, neuropsychologists, psychiatrists, psychotherapists, doctors and specialist nurses trained in cognitive behavioural therapy who work with older people or with families. It assumes that you can assess depression and suicide risk in adults, and that you have access to supervision.
It is written neither for the people affected nor for those close to them. It contains descriptions of abuse, of end of life and of the course of the illness which, read outside a supportive relationship, would do more harm than good.
The four preliminary decisions
Has the diagnosis been made, and by whom? A neurocognitive disorder that is suspected but has not been assessed is not supported in the same way as an established one. If there has been no medical assessment, the first task is to refer. Section 3.
Who is your patient? The carer, the person affected, or both. This is not a formality: confidentiality, consent and the object of the work all depend on it. If you see both, say so to each, and agree what will be shared. Section 17.
Is there danger today? For the person affected — abuse, neglect, driving, wandering, fire, medicines — and for the carer — major exhaustion, severe depression, suicidal thoughts. Sections 10 to 12.
And what can still be changed? At the mild stage, a great deal. At the severe stage, the work is almost entirely about the carer, comfort care and end of life. The programme adapts to the stage; it is not applied identically.
What this programme does not treat
It does not slow the illness down. No psychological intervention has been shown to alter the course of a neurodegenerative disease. Promising it is a fault, and families pay dearly for it.
It does not replace medical follow-up, nor neuropsychological assessment, nor occupational therapy, nor social services. It works alongside them.
It does not treat severe depression in the carer on its own. That is treated in its own right, with the manual Treating depression in adults: a therapist's manual, in parallel.
It does not treat prolonged grief after the death. The grief that follows the person's death has its own tools.
How to use it
Read the whole thing before the first session, especially sections 3, 6, 9, 11 and 32: what is yours to do, differential diagnosis, the model, abuse, and the approach to behaviours.
Each session is described on the same frame: the aim, the steps, what you say, the common errors, and the criterion for moving on.
Three warnings specific to this presenting problem.
The carer does not come for themselves. They come for help with "Mum's outbursts". That is legitimate, and it is the way in: you start with what they ask for, and you work on their own suffering by that route.
The person affected is often absent from the conversation that concerns them. Talking about them in front of them as though they were not there, deciding in their place what they can still decide, or not asking their opinion: these are the commonest errors in this field, and they are made with the best of intentions.
And the therapist may want to repair what cannot be repaired. The illness progresses. The criterion of success is not that decline stops, it is less suffering at each stage.
3. What is yours to do, and what is not
What is not yours to do
Aetiological diagnosis. Saying that this is Alzheimer's disease, vascular damage, Lewy body disease or frontotemporal degeneration requires a medical examination, blood tests, often imaging and sometimes biomarkers. That belongs to the doctor — general practitioner, neurologist, geriatrician, old age psychiatrist — and, depending on the country, to a specialist memory clinic. In France, the Haute Autorité de santé (2018) describes this pathway, from the recognition of the first signs and the giving of the diagnosis through to support for carers and the severe stages.
Full neuropsychological assessment, unless that is your training. It describes a cognitive profile, compares it with norms, and contributes to the diagnosis. Brief screening tests such as the MMSE (Folstein et al., 1975) or the MoCA (Nasreddine et al., 2005) point a direction; they do not diagnose, and they are sensitive to educational level, mood, hearing and language.
And giving the diagnosis. That belongs to the doctor who made it. What is yours is what happens afterwards.
What is yours to do
Spotting and referring. A cognitive complaint, a change in behaviour, a worried family: you note what you observe, you ask since when and how it has changed, and you refer with a useful letter.
Checking what gets missed. This is your most valuable contribution, and it is often absent: depression, delirium, a medication effect, an uncorrected hearing or sight impairment. Section 6.
Supporting the person after the diagnosis is given. What the person has understood, what they think of it, what they want to know, what they do not want to know.
Treating the carer's suffering. That is the heart of this manual, and that is where the evidence is strongest.
Treating anxiety and depression in the person affected, with adapted methods. Section 34.
Running the structured approach to behaviours, together with the doctor and the care staff. Section 32.
And holding the thread. The illness lasts for years, the professionals involved change, and the family needs someone who knows the story.
4. Four pictures not to be confused
1. Ordinary ageing and subjective complaint
What you observe. A person worried about their memory — proper names, words on the tip of the tongue, mislaid objects — whose daily life has not changed. Often anxious, sometimes after a relative has been diagnosed.
What points to it. It is the person who complains, not those around them. They remember their lapses in detail. Nothing has been given up.
What it implies. One assessment, done properly, once, then an end to personal checking. When anxiety dominates, it is the anxiety that is treated, and the programme The fear of being ill: health anxiety may help.
2. Mild neurocognitive disorder
What you observe. A real decline, noticed by the person or by someone close, objectified by an assessment, in one or more domains. The person remains independent, but at the cost of effort, lists and new strategies.
What points to it. Independence is preserved in the main. Complex activities — paperwork, accounts, a journey — take more effort or more help.
What it implies. A medical assessment to look for the cause, because depending on that cause the disorder may remain stable, improve or progress (World Health Organization, 2022), and because the risk of progressing to dementia is higher (Petersen, 2004). This is the moment for the module for the person affected.
3. Major neurocognitive disorder
What you observe. A clear decline in one or more domains which affects independence in daily life: the person needs help with what they used to do alone.
What points to it. The loss of independence. That is what separates the major disorder from the mild one, far more than a test score.
What it implies. The carer's programme, the person's module for as long as the stage allows, and anticipation: legal protection, driving, advance statements.
4. Delirium
What you observe. A person who, over a few hours or a few days, becomes disorientated, inattentive, drowsy or agitated, with variation across the day, sometimes with hallucinations.
What points to it. The rapid onset and the fluctuations. A neurocognitive disorder settles in over months or years; delirium settles in over hours or days.
What it implies. A medical emergency, not a psychological consultation. Infection, dehydration, metabolic disturbance, medication, pain: the causes are often multiple, and they are looked for and treated (Inouye et al., 2014). Dementia is one of the main risk factors for delirium, and the two often coexist.
The three sorting questions
"Since when, and how did it begin?" Hours, months or years. An abrupt onset points elsewhere.
"What does your relative no longer do, or no longer do alone?" It isolates the impact on independence, which separates mild from major.
"And how are their spirits?" It opens the commonest and most treatable differential: depression.
5. What the classifications say
The categories, reformulated
The wordings below are a reformulation in our own words, as an aide-memoire. They do not replace the manuals: refer to DSM-5-TR (American Psychiatric Association, 2022) and to ICD-11 (World Health Organization, 2022) for the wording itself.
Major neurocognitive disorder, in DSM-5-TR. A marked decline from the previous level, in one or more cognitive domains — complex attention, executive function, learning and memory, language, perceptual-motor abilities, social cognition. This decline is reported by the person, by someone close or by the clinician, and it is documented by a standardised assessment or, failing that, by another quantified one. It compromises independence in daily life. It does not occur only in the course of a delirium, and no other mental disorder accounts for it better. The term dementia remains in use.
Mild neurocognitive disorder, in DSM-5-TR. The same reasoning, with a modest decline, and independence preserved even if it demands more effort, compensatory strategies or adjustments.
The manual's specifiers. The presumed cause — Alzheimer's disease, vascular damage, Lewy body disease, frontotemporal degeneration, head injury, a substance or medication, Parkinson's disease, other conditions, multiple causes — with a degree of certainty. The severity of the major disorder, according to the impact on independence. And the presence of associated behavioural or psychological features.
What ICD-11 adds
It places the neurocognitive disorders among the mental disorders, together with delirium, mild neurocognitive disorder, amnestic disorder and dementia, while the diseases that cause them are described among the diseases of the nervous system. The two are linked at the point of coding (Gaebel et al., 2019).
To speak of dementia, it requires several cognitive domains to be clearly affected — at least two —, memory most often but not necessarily. The person has lost ground compared with what they used to do, age alone does not account for it, and their difficulties seriously compromise their independence in daily life.
It describes mild neurocognitive disorder as a mild, objectified decline in one or more domains which does not compromise functioning to any great extent.
And it allows the behavioural or psychological disturbances of dementia to be coded separately. That is a useful recognition: they are often what causes the suffering and what makes living at home break down.
What the classifications do not say and must be assessed
They say nothing about the carer, although their state predicts part of what will happen to the person.
They do not say what the person knows about their disorder. Anosognosia — not perceiving one's own deficits — is common, it is not psychological denial, and it changes the whole approach.
They say nothing about safety: abuse, driving, money, medicines.
And they do not say who this person was, their tastes, their habits, their values — although that is what makes it possible to understand their behaviours and choose their activities.