What to Do After a Dementia Diagnosis: A Practical Family Guide

Topic cluster: Dementia & Memory Care | Reading time: 7 min

The weeks after a parent receives a dementia diagnosis can feel overwhelming. There is a great deal to process emotionally, and at the same time, a growing sense that practical decisions cannot be put off. The good news is that an early diagnosis means time — time to plan, to talk, and to put the right support in place before a crisis forces your hand. This guide gives you a clear, prioritised checklist of what to do first.

The First Two Weeks

The priority immediately after diagnosis is not to try to solve everything at once. Focus first on absorbing the news and having honest conversations.

Immediate priorities:

• ☐ Attend any follow-up appointment at the memory clinic
• ☐ Get the diagnosis confirmed in writing with the type and stage noted
• ☐ Read about the specific type of dementia diagnosed (Alzheimer's, vascular, Lewy body, etc.)
• ☐ Contact the Alzheimer's Society (0333 150 3456) or Dementia UK (0800 888 6678) for information
• ☐ Allow yourself and your parent time to grieve — this is a significant loss

Legal Planning — Act Now

This is the most time-sensitive priority. Lasting Powers of Attorney (LPAs) can only be set up while your parent still has mental capacity. Dementia progresses, and the window for legal planning may be shorter than you expect.

Legal actions to take urgently:

• ☐ Set up a Property and Financial Affairs LPA — covers bank accounts, bills, care fees
• ☐ Set up a Health and Welfare LPA — covers care home placement, medical decisions
• ☐ Discuss and document an Advance Decision to Refuse Treatment if your parent has strong views about future medical intervention
• ☐ Create an Advance Statement — a non-binding record of your parent's wishes, values, and preferences for future care
• ☐ Review or make an updated will

Contact a solicitor who specialises in elder law, or use the Office of the Public Guardian's online LPA service (gov.uk/lasting-power-attorney).

Benefits and Financial Support

Several financial benefits become available following a dementia diagnosis. Many families don't claim them, either through not knowing they exist or assuming they won't qualify.

Apply for Attendance Allowance first — it is not means tested and does not count towards the care fees means test.

Health and Care Planning

GP and Memory Clinic

• Ask the GP to add dementia to the care record and review all medications (some medications can worsen cognitive symptoms)
• Attend regular reviews at the memory clinic — typically 6–12 monthly
• Ask about any medications that may help slow progression (e.g., donepezil, rivastigmine for Alzheimer's)

Care Needs Assessment

Contact the local authority's adult social care department to request a Care Needs Assessment. This is free and gives access to:

• Home care services
• Day centres
• Respite care
• Equipment and home adaptations
• Financial support (if eligible after means testing)

If your parent is living alone, a needs assessment is especially important.

Safety at Home

In the earlier stages, many people with dementia can continue living at home with the right support. Key safety considerations:

• Kitchen safety — automatic gas shut-off valves, induction hob guards
• Wandering — door sensors, GPS trackers, safe return schemes (Alzheimer's Society offers the Herbert Protocol)
• Falls — grab rails, stair gates, falls alarm
• Medication — dosette boxes, automated pill dispensers with reminders
• Finances — consider limiting access to large sums; monitor accounts for unusual transactions

Building a Support Network

Dementia care is not something to do alone. Build a network early:

• Admiral Nurses — specialist dementia nurses who support families (free, via Dementia UK)
• Local dementia support groups — for your parent and for you as a carer
• Carers UK helpline — 0808 808 7777
• Social worker — assigned through the local authority following a care needs assessment
• Occupational therapist — can assess the home and recommend adaptations

Talking to other people who are in the same situation can be one of the most practically and emotionally valuable things you do.

Having Conversations While You Can

There is no right time to have difficult conversations, but having them whilst your parent can still express their wishes is vital. Try to discuss:

• What kind of care do they want as the illness progresses?
• Do they want to stay at home for as long as possible?
• What matters most to them day-to-day (routines, hobbies, people, places)?
• What are their views on care homes — fears, preferences?
• Are there particular people they want involved in decisions?

Document their answers — ideally as an Advance Statement — so that future carers have a clear picture of who your parent is.

Planning for the Future

It is worth beginning to think about future care options now, even if they are some way off:

• Research local dementia-specialist care homes so you're not starting from zero in a crisis
• Understand the local authority's care funding thresholds
• Consider whether your parent's home will factor into a means test
• Speak to a financial adviser about care fees planning

Planning ahead for dementia care? homeformum.com helps families find specialist dementia care homes and understand all the funding options available.

Related articles: Getting a Dementia Diagnosis | Stages of Dementia | Lasting Power of Attorney Explained | Care Needs Assessment — How It Works | When Should Someone with Dementia Go into a Care Home?