Dementia Diagnosis — What Happens Next

A dementia diagnosis is life-changing news. But it is not the end — many people live well with dementia for years. This guide explains what support is available, what to organise, and how to plan ahead.

✍️ Paurav Joshi, Director, Ekvarta Ltd 📅 Last updated: May 2026

A diagnosis of dementia does not mean that the person immediately loses their decision-making ability. Most people with early dementia retain full or substantial capacity for a significant time. This period is the most important time to plan.

Your Feelings Are Valid

A dementia diagnosis brings a storm of emotions — shock, grief, fear, anger, and sometimes relief that there is now an explanation for what has been happening. All of these responses are valid. Give yourself and your family time to process before making major decisions.

What to Do in the First Weeks

  1. 1

    See the Memory Clinic or Dementia Specialist

    After diagnosis, you should be referred to a memory clinic or dementia specialist (usually a geriatrician or psychiatrist). Ask about medication — for Alzheimer's disease, cholinesterase inhibitors (donepezil, rivastigmine, galantamine) can slow progression in some people.

  2. 2

    Set Up a Lasting Power of Attorney — Urgently

    An LPA must be made while the person has mental capacity. This is the most time-sensitive action after a diagnosis. Both types — Property & Financial Affairs, and Health & Welfare — should be done now. See our LPA Guide.

  3. 3

    Notify DVLA (If Still Driving)

    A diagnosis of dementia must be reported to the DVLA. The person may still be able to drive for a period — DVLA will arrange an assessment. Not reporting is a legal offence and may invalidate insurance.

  4. 4

    Claim Benefits

    Dementia may entitle the person to Attendance Allowance (if over State Pension age) or PIP (if under State Pension age). These are not means-tested and do not affect other income. See our guides: Attendance Allowance, PIP.

  5. 5

    Register with the Herbert Protocol

    Complete a Herbert Protocol form and register it with your local police. This information is used immediately if the person becomes lost. See our Herbert Protocol Guide.

  6. 6

    Contact Alzheimer's Society

    The Alzheimer's Society provides post-diagnosis support including a Dementia Advisor who can help navigate the system. Contact the helpline: 0333 150 0767 (Mon–Wed, Fri 9am–5pm; Thu 9am–8pm; Sat–Sun 10am–4pm).

Planning for the Future

Early diagnosis is actually an opportunity — it allows time to plan:

  • Advance Care Planning — documenting wishes about future care, medical treatment, and place of care. This can be done informally or as a formal Advance Decision to Refuse Treatment (ADRT).
  • Financial review — review wills, insurance policies and financial arrangements with an IFA and solicitor
  • Home safety — consider home adaptations and care technology early, while the person can be involved in decisions. See our Home Adaptations and Care Technology guides.
  • Social activity — maintaining social engagement and meaningful activity helps cognitive function and wellbeing

Home Care After Dementia Diagnosis

Many people with dementia live at home for years after diagnosis with relatively little support needed initially. As needs increase, home care can be introduced gradually:

  • Companionship visits — social engagement and gentle activity
  • Medication prompts — consistency is vital as memory becomes affected
  • Meal preparation and nutrition support
  • Housekeeping and shopping
  • Safety monitoring and escalation

Introducing a regular carer early — while the person with dementia can build a relationship and familiarity — is much easier than introducing care during a crisis. Familiarity is important in dementia; a consistent carer the person knows and trusts is far more effective than a rotating series of strangers.

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