Dementia before 65: what changes

My husband is 58 and has been diagnosed with dementia. He was still working. Everything I read talks about older people — what about us?

Early-onset dementia (before 65) brings the same symptoms but in a completely different life context — career, mortgage, children, plans. It's another earthquake, and it deserves its own answers.

What's different

• Diagnosis takes longer: no one thinks of dementia at 55, and the first signs are often mistaken for stress, depression, or burnout. If this was your experience, anger at that lost time is normal.
• Work and financial decisions are on the table: when and how to leave employment, rights, pensions, and disability benefits — seek advice from your country's social security and, if possible, legal support BEFORE making irreversible decisions.
• Children may be teenagers or young adults: they need age-appropriate truth and space for their emotions (there are materials from associations for children of parents with dementia).
• Physically, the person is strong and active — which is both good (activity, exercise, projects) and challenging (more mobility in risky behaviours).

What to do now

• Handle legal and financial planning while he can participate: powers of attorney, directives, access to accounts.
• Look for specific early-onset groups (Alzheimer's associations increasingly have them): sitting in a room with spouses of 80-year-olds won't address your life.
• Maintain purpose: adapted work as long as it makes sense, volunteering, physical projects.

Sources: Alzheimer's Association (younger-onset); Alzheimer Europe.