Key takeaways
- Post-diagnostic support should include information, a named contact, a care plan and help for the carer; ask the memory clinic or GP what is available locally.
- Do the paperwork early: lasting power of attorney, a benefits check (Attendance Allowance or PIP) and a conversation about future wishes.
- Staying socially and physically active slows decline and improves wellbeing; isolation makes everything harder.
- AgeTrust has a long record in post-diagnostic support and offers befriending to people living with dementia and their carers.
AgeTrust spent years working on post-diagnostic support with the Dementia Action Alliance and the Department of Health, so we know how often people leave the memory clinic with a diagnosis and very little else. This guide sets out what should happen next, and what you can do if it does not.
What support should I get after a dementia diagnosis?
Good post-diagnostic support includes clear information about the type of dementia, a named person to contact, a review of medication, a care plan that is actually written down, and support for the carer in their own right. Not every area delivers all of this. If you have not been offered it, ask the memory clinic or your GP directly, and contact Alzheimer's Society or Dementia UK for advice.
What paperwork should we do early?
- Lasting power of attorney for health and welfare, and for property and finances, while the person can still choose their attorney.
- A benefits check. Attendance Allowance (over State Pension age) or PIP (under 66) are not means-tested and many people with dementia qualify. Carer's Allowance may apply to the carer.
- Council tax. A person with a severe mental impairment, including dementia, may be 'disregarded' for council tax, which can reduce the bill.
- Future wishes. An advance statement or advance decision records what matters to the person while they can say it.
How does staying connected help?
Social contact, physical activity and purposeful routine are among the few things shown to slow decline and improve day-to-day wellbeing. Isolation does the opposite: it speeds confusion, lowers mood and exhausts carers. A regular befriender, a dementia-friendly group, or simply a daily phone call keeps the person in the world. Our befriending volunteers visit people living with dementia and their carers, and our Men in Sheds workshop welcomes members in the early stages.
What about the carer?
Carers are entitled to their own assessment from the council and to support in their own right. Many feel they cannot leave the person alone, which is where a befriender who knows the situation, or a sitting service, gives the carer a reliable break. If you are caring for someone, read our checklist for families and Carers UK for practical and financial help.
Frequently asked questions
Sources and further reading
The AgeTrust team
Befriending, Men in Sheds and PIP support
AgeTrust (charity no. 1124019) has worked on older people's health and loneliness since its founding, including national programmes with the NHS and the Department of Health. Articles are reviewed by the team and updated when guidance changes.
