What to Ask a GP After a Dementia Diagnosis: A Practical Checklist for Families

Medically Reviewed by: Dr Jackie Gray, Public Health Expert and Retired GP
(Carents Trusted Reviewer Programme – Last reviewed March 2026)

If time is tight, focus on these:

1. What type of dementia is it, and how advanced is it?
2. Who is coordinating care, and how do we contact them?
3. Do we have a written care and support plan?
4. Are medicines being reviewed regularly?
5. What support is available for us as a family?
   
   

Everything else below helps you go deeper if you need to.

GP appointments are short. If you walk in unprepared, it is easy to forget the most important things.

Here is how to prepare for a dementia GP appointment:

• Write down recent changes. Be specific. “More confused” is vague. “Got lost walking to the local shop” is clearer.
• List all medications, including over-the-counter tablets.
• Bring hearing aids and glasses.
• Agree in advance who will speak if more than one family member attends.
• Decide what your top two priorities are.
  
  

If your parent struggles to explain symptoms, your observations are important. Do not minimise things to avoid embarrassment. Small details may change decisions.

Dementia usually gets worse over time. Symptoms change and what maybe feels manageable now may not be in a year.

It can affect:

• Memory
• Language
• Judgement
• Mood
• Everyday tasks like dressing, shopping, cooking or managing money

Around 80% of people with dementia  will experience changes in behaviour or mood at some point. This might include agitation, wandering/walking with purpose, sleep problems, or seeing things that are not there.

Family members are usually the first to spot subtle changes. Your observations matter and speaking up early may prevent crises later.

Not all dementia is the same.

Ask:

• What type of dementia is this? Alzheimer’s disease, vascular dementia, Lewy body dementia?
• How advanced would you say it is, mild, moderate, or more advanced?
• What changes are likely over the next year?
  
  

Different types behave differently. Lewy body dementia, for example, can be more sensitive to certain medications.

You should receive written information about:

• The diagnosis
• Who is involved in care
• Who to contact if things change
  
  

If you did not receive this, ask for it.

After diagnosis, most people should be linked to a memory service or specialist dementia team.

Ask:

• Is there a local memory clinic or dementia team?
• How do we access it?
• What support do they provide beyond diagnosis?
  
  

Early connection to specialist support makes everything else easier.

Dementia care often involves:

• The GP
• Community nurses
• Social care
• Voluntary organisations
  
  

Without coordination, things get missed.

Ask:

• Is there a named care coordinator?
• Who do we contact if something changes?
• How do services communicate with each other?
  
  

NHS guidance says someone should be clearly responsible for coordinating care. If you do not know who that is, ask.

There should be a written care and support plan.

Ask:

• What is included?
• How often will it be reviewed? Once a year is common.
• Does it include other ongoing health problems?
  
  

A good plan should explain:

• Current needs
• What to do if symptoms change
• Who to contact in a crisis
  
  

If there is no written plan, request one.

It can feel uncomfortable to talk about the future. But planning early reduces stress later.

Ask:

• Is now the right time to set up Lasting Power of Attorney?
• Should we discuss advance care wishes?
• Where can we get legal or financial advice?
  
  

Having these conversations while your parent can still express their wishes protects everyone later.

There is no cure for Alzheimer’s disease or most other types of dementia.

Some medicines may help symptoms for a period of time.

Ask:

• Are medicines appropriate in this case?
• What benefits should we realistically expect?
• What side effects should we watch for?
• How often will this prescription be reviewed?
  
  

Be clear about expectations. These medicines do not stop dementia. They may ease symptoms for a while.

Medication review is essential.

Ask:

• Could any medicines be increasing confusion or drowsiness?
• Are any drugs interacting badly?
• If antipsychotics are prescribed, how long will they be used and when will they be reviewed?
  
  

Some medicines can worsen memory or increase fall risk.

As a rough guide, medication reviews often happen every six to twelve months. If that is not happening, raise it.

There are three groups of medicines to be cautious about:

Medicines which increase the “anticholinergic burden”                      

This is a technical pharmacological term covering a vast number of different and commonly prescribed medicines. Often one or two – even a few – of these medicines can be tolerated but too many can result in an additive effect (burden) resulting in unwanted side effects.
It is therefore important to ensure that anyone with dementia has their regular medication reviewed on a regular basis (six monthly is an average benchmark).

Medicines which act as major tranquillisers or antipsychotics

These drugs are often prescribed to manage the behavioural and psychological symptoms associated with dementia (BPSD) – symptoms such as agitation, aggression, wandering or distress.
However, these medicines should be used with care because they have some serious side effects especially in people living with Parkinson’s disease dementia and dementia with Lewy Bodies.

Experts are also concerned that these medicines are being over prescribed in some people with dementia when measures such as understanding and addressing the underlying reasons for any distress (eg pain, infection, not having the right care) could be more effective. 

Best practice for managing BPSD entails working with those affected, and involving their families, carents and carers as appropriate, to understand and address the underlying issues before starting pharmaceutical treatments. If these drugs are prescribed, then the reasons should be clearly specified from the outset and the prescription should be checked and reviewed every 6 weeks.

Antidepressant medicines

Research evidence does not provide strong support for treating dementia with antidepressants. National expert guidance also advises against the use of antidepressants to manage mild to moderate depression in people living with mild to moderate dementia, unless the medicines are indicated for a pre-existing severe mental health problem.

Support does not always mean tablets.

Ask about:

• Memory and thinking activities
• Group reminiscence sessions
• Occupational therapy
• Practical daily living support

These approaches focus on maintaining independence and improving day-to-day wellbeing.

Available support varies by area. It may include:

• Home adaptations
• Day services
• Respite care
• Carer support groups
• Transport help
  
  

Ask your GP or care coordinator what exists locally. Do not assume you will automatically be referred.

Hospital stays can be disorientating and increase the risk of further decline.

Ask:

• How can we reduce avoidable admissions?
• Is there a dementia liaison team at the hospital?
• What information should go with them?
  
  

Planning ahead reduces panic in a crisis.

Caring can be exhausting. It can also be lonely and repetitive.

Ask:

• Can we request a carers assessment or carer support?
• Are there local training sessions?
• Where can we access emotional support?
  
  

You are not just an add-on to the patient and your wellbeing can affect theirs.

Many people with dementia also live with other health problems such as:

• Arthritis
• Diabetes
• Heart disease
• Hearing loss
• Depression
  
  

Ask:

• Are these being actively reviewed?
• Could untreated health issues be making symptoms worse?
  
  

Infections, pain, or unmanaged diabetes can quickly trigger deterioration.

Remember:

• Doctors can only share information with consent.
• Write questions down before you go.
• Ask for written summaries if possible.

• Alzheimer’s Society: 0333 150 3456
• Dementia UK, Admiral Nurses: 0800 888 6678
• The Lewy Body Society
• The Brain Charity: 0800 008 6417

• Look into iSupport, a World Health Organisation programme offering training for carers.
• Learn more from the Alzheimer’s Society’s Dementia Friends initiative.
• Explore the NHS Well Pathway for Dementia and other local care improvements.

Medically reviewed by Dr Jackie Gray, March 2026