coordinating dementia care from diagnosis to end of life
Key points
- Start care coordination at diagnosis: ask for a named professional and a face-to-face needs assessment.
- Begin advance care planning early, while the person can still express their wishes. Use tools like the Conversation Starter Kit.
- Build a team: memory service, GP, specialists, social services, and support groups. Don’t go it alone.
- Review the care plan regularly — at least every 6–12 months in early stages, more often later.
- Plan for respite care before you are exhausted. Your wellbeing is essential to good care.
- Treat dementia as a terminal illness: start palliative care conversations in the middle stage to ensure comfort at the end.
General caregiving information, not medical advice. Check medications and major care changes with your clinician.
Step-by-step
Ask for a named care coordinator at diagnosis by saying: 'I understand NICE recommends a single professional to coordinate care — can you assign someone to be our main contact?' This person will arrange a face-to-face needs assessment.
Create a folder with the diagnosis letter, care coordinator contact, current medication list, advance care plans, and lasting power of attorney forms. Bring it to every appointment.
Complete lasting power of attorney for health and for property/financial affairs while the person still has capacity. Contact the Office of the Public Guardian to begin.
Have advance care planning conversations early using a dementia-specific advance directive. Ask: 'If you could no longer speak for yourself, what would you want your care to look like?' Document answers and share them with the care team.
Ask the care coordinator for a follow-up review every 6–12 months in early stages, and more often as needs change. Discuss new symptoms, caregiver coping, and whether the support package fits.
For mixed dementia or complex needs, ask for referrals to a neurologist, geriatrician, or memory clinic. For behavioural symptoms, a liaison psychiatry service can help.
Arrange a home safety assessment through social services or occupational therapy for grab rails, bed alarms, and lighting changes. For Lewy body dementia, check medications can worsen symptoms.
Plan for respite care before exhaustion: ask about day centres, short-term care homes, or in-home sitters. A few hours a week prevents caregiver burnout.
In the middle stage, raise palliative care with the GP: 'I know dementia is life-limiting — can we talk about what palliative care would look like?' In final weeks, work with district nurse or hospice to manage pain and agitation. Avoid hospital transfers unless symptoms cannot be managed at home.
What not to do
Don't wait for a crisis before planning. Start advance care planning at diagnosis; have conversations about death while the person can give clear answers.
Don't assume the GP will coordinate everything. Ask proactively for a named care coordinator and a face-to-face needs assessment.
Don't ignore your own needs as a caregiver. Join a support group, take breaks, and request a carer's assessment from social services.
Don't treat dementia as just a memory problem. In later stages the person may not communicate pain, so learn non-verbal cues like grimacing or restlessness.
Don't manage finances without legal authority. Set up automatic payments and lasting power of attorney for finances; restrict access only after formal capacity assessment.
Practical tools
Conversation Starter Kit
A guided tool for initiating advance care planning discussions about values and preferences for future care.
Dementia-specific advance directive form
A legal document tailored to dementia that specifies care wishes, including treatments to accept or refuse as the condition progresses.
Discuss with your clinician
Ask your GP or specialist: ‘What is the best way to manage pain in my loved one, especially if they cannot tell me where it hurts?’ Pain is often undertreated in dementia.
Discuss any medications that might affect cognition, such as anticholinergics, sedatives, or certain bladder medications. Ask: ‘Can any of these be reduced or stopped?’
If considering a feeding tube in late stages, ask: ‘What does the evidence say about benefit versus harm for someone with advanced dementia?’ In most cases, hand-feeding with comfort is preferred.
Ask about the role of a palliative care team: ‘When should we involve a palliative care specialist, and how do we get a referral?’
If the person has mixed dementia, ask: ‘How do we manage the different types together? Are there any treatments that might help one type but harm another?’
Ask your doctor: ‘If my loved one still has financial capacity, what steps should I take to support them without overstepping? At what point should we consider a capacity assessment for financial decisions?’
Ask your doctor: ‘What is the safest way to manage any medications that could affect cognition or behaviour, especially for Lewy body dementia?’
Related guides
- Starting the Advance Care Planning Conversation and Documenting Wishes
- caregiver leadership and self-advocacy
- Palliative care access for dementia versus other conditions
- Pandemic safety adaptations for home caregiving
- Managing Finances and Legal Documents from a Distance: A Long-Distance Caregiver's Guide
- Managing behavioral symptoms of Alzheimer's: a stepwise approach
- Building Resilience in Mixed Dementia: A Practical Guide for Caregivers
- Hiring a caregiver for a loved one with dementia
- Caregiving techniques for attention deficits in dementia
- Finding Your People: A Caregiver's Guide to Dementia Support Groups