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An animated, cited guide for students, patients and caregivers. Educational only, not medical advice. Your place is saved on this device.

Not medical adviceAlzheimer's Companion is an educational synthesis of published literature for study, patient understanding and family caregivers. It does not replace a clinician. Doses and guideline statements are reported as published, not as instructions for any individual.

Part 4 · Living, caring, preventing

Living with dementia and caregiving

For the person living with dementia and for the people beside them. Follow the years after a diagnosis, see which plans and safety questions tend to come up at each point, and what the research says helps the family carer.

The caregiving years

Schematic. The order and pace differ from person to person, and many people never meet some of these points.

The family carer

Bars are drawn to scale within each row only. Each row is a different trial with a different outcome.

Words matter

Dementia Australia's language guidelines ask writers to put the person first. The table shows some of the swaps they suggest. 112

Stigma is common. In a global survey of almost 70,000 people, 62% of healthcare practitioners thought dementia is a normal part of ageing, 35% of carers had hidden a relative's diagnosis from at least one person, and over 85% of people living with dementia said their opinion had not been taken seriously. 9

Where sources disagree. The guidelines advise against "carer burden", preferring neutral wording such as "the impact of supporting someone". Research still measures "caregiver burden", for example with the Zarit Burden Interview used in trials. This page uses "impact" in its own words and "burden" only when naming a research measure. 112,189,297

Avoid
Suggested instead
sufferer, victim, afflicted
person living with dementia
demented, senile dementia, dementing illness
person with dementia, person with a diagnosis of dementia
early onset
younger onset dementia
challenging behaviours
changed behaviours, expressions of unmet need
carer burden, burden of caring
impact of supporting
empty shell, wanderer, "patient" outside medical settings
labels to avoid altogether

Alzheimer's Companion is an educational synthesis of the published literature on Alzheimer's disease, made for health-science students, people living with the disease, and the families who care for them.

It is not medical advice. It cannot diagnose, and nothing here should change a treatment without your own clinician. Guideline doses are quoted as published. Please check the original sources, which are listed in full in the Sources module.

Part of Medical Companions, animated and cited guides to one disease each. Also there: Parkinson's Companion, a related guide to Parkinson's disease, the other common neurodegenerative disease, and FMF Companion, on Familial Mediterranean Fever.