Communicating a dementia diagnosis

Clinicians have told us that delivering a diagnosis of dementia can be hard, and some feel poorly prepared to deliver ‘bad news’. Dementia is a life-changing diagnosis, and is often stigmatised and feared by patients and care partners. Some clinicians feel that there is little they can do, or little they can offer in the way of ‘treatment’ or hope.

You may find it hard to manage and support distressed reactions to diagnosis. You may have to grapple with the ethics of truth-telling and respecting a family’s wishes, such as not to tell the patient the diagnosis. We present research, clinical advice and tools to help you sensitively deliver a clear diagnosis. Providing people with a clear diagnosis will help empower people living with dementia and care partners to move forward with dementia.

Common challenges of dementia diagnosis

Find communicating dementia diagnoses difficult and would like more training

Worry about distressing their patients

May believe that little or no intervention is possible and are therefore reluctant to give a diagnosis

Find post-diagnostic support is limited in availability

References: Brodaty et al 1994; Karnielli-Miller et al 2007; Milby et al 2017; Phillips et al 2012; Foley et al 2017, Low et al 2018.

Your impact on diagnosis – Vera’s story

Vera’s (a care partner) story illustrates how the sensitive delivery of Richard’s diagnosis helped them to come to terms with the diagnosis.

“The doctor had known for two years that Richard had dementia. It was me who didn’t want to know. I was avoiding the reality. We’ve been married for 55 years and I didn’t want to face losing him bit-by-bit to dementia. I thought if I knew that would be the end of our lives. “

When we finally got a diagnosis, I was sitting in the doctor’s office with tears streaming down my face. The doctor was very calm and compassionate talking to my husband and holding his hand. He was direct. He said “I have to tell you Richard, you have dementia”. I appreciated him talking to my husband. It was treating him like he was still a person.

I needed time to let the diagnosis sink in. The doctor had prescribed some drugs to help with his memory. They helped a bit.

About a month later we talked with the doctor again to arrange what to do next. I knew I needed help. He referred me to a dementia counsellor to help me come to terms with the future. We joined a support group we went to together. It was scary at first to see people further down the track. Richard initially said “I’m never going back” but we did, and it has been helpful for both of us. We’ve made new friends there who really understand. The dementia counsellor gave me information to give to our friends and family to help them understand what is going on and what they can do. They are now giving us support – sometimes doing practical things like driving us to the shops, but I find just having people to talk to is the best support. Friends include Richard in social events too – even when he says or does odd things. We are still fearful of what the future will bring, but we are much better prepared.”

Advice for giving a dementia diagnosis

We share some practical advice to help you to give a dementia diagnosis clearly, sensitvily and empathetically using the principles of the Communication, Comfort and Connections model.

Communication, Comfort and Connections

With thanks to Dr. Kannan Natarajan, Consultant Geriatrician, The Prince Charles Hospital, Qld, Australia.

Use the principles of Communication, Comfort and Connections to give the diagnosis clearly, sensitively and empathetically.

Communication: Make sure you have a sufficiently long appointment and avoid interruptions.

Speak directly with the person with dementia, this reinforces their personhood and sends a clear message that they are important. Some people with dementia told us that their doctors talked to their carers or families and not to them after their diagnosis and they felt lesser because of this.

Deliver one piece of information at a time, then ask what they want to know. Provide frequent pauses so they can ask questions. Monitor reactions and let the patient dictate the pace of the conversation.

Use accurate terms ‘dementia’ or ‘Alzheimer’s disease’ to avoid misunderstanding.

Comfort: Providing comfort when delivering a diagnosis is critical. Use verbal and non-verbal communication to convey warmth and empathy. Comfort is not minimising the impact of the diagnosis or offering unrealistic reassurance.

You can provide comfort by acknowledging feelings such as shock, relief, distress or anger. Validate the person’s feelings. Let the patient and family know it will take time to come to terms with the diagnosis and that ongoing support is available. Send the message “you are not alone”.

Connections: Communication and comfort is assisted by having a relationship with the patient and family, don’t give a diagnosis during the first visit if at all possible.

Support starts at the point of diagnosis. Provide a written summary of what was discussed at the interview, a telephone number of a dementia help line. If possible, schedule a follow-up appointment in a few weeks when the person and family can ask questions and work on their plan of support. Our research showed the most important element missing from the diagnostic conversation was a follow up appointment. If it is not possible to offer a timely follow-up appointment, provide written recommendations as to where to seek further support, and make a follow-up referral to your patient’s GP and/or the local dementia advisory service.

Good communication is critical
Further advice on good communication, delivering diagnosis and responding to emotional reactions can be found here

Watch this short video
See how one experienced clinician use these principles to deliver a diagnosis with compassionate honesty.

A plan of support

Following diagnosis, the most common reaction of people with dementia and care partners is “what do I do now?” The diagnostic interview is where a plan of support needs to start.

Use the Diagnostic Checklist (needs to be linked) to help you get started with giving minimal but critical information and contacts. Plan or refer to a follow up interview where a support plan can be developed and use Forward with Dementia to help people find emotional and practical support.

Common questions around delivering a dementia diagnosis

How do I sensitively and clearly tell someone they have dementia?

There is no one right way to tell someone they have dementia.

Many people who have dementia want to know their diagnosis. Knowing can provide a sense of relief and lead to patients and families being able to plan head, seek support, make practical decisions, learn how to adapt to the symptoms and maintain or even improve quality of life. It is important that when talking about a dementia diagnosis it is done in an unambiguous, respectful manner.

However, some patients do not recognise that there is a problem, are in denial of their difficulties, or do not want to know the diagnosis. These patients may need to be told the diagnosis in several steps, or even over several appointments.

Use ‘ask-tell-ask‘ cycles to gauge the patient’s perspective, give the diagnosis, understand the patient’s emotional response, give recommendations for management, and understand ongoing needs. When giving information and further recommendations only give a maximum of three pieces of information at a time and avoid medical jargon.

Ask the patient and family their understanding of the assessments. “We’ve done a lot of tests of your memory and thinking. What is your understanding of the purpose of these tests?”

Tell the patient the diagnosis. If the person suspects they have dementia you might say: “The test results suggest that you have Alzheimer’s disease, this is a type of dementia”. If the person says that nothing is wrong and they don’t know why they are being tested: “The test results showed problems with your memory and thinking and we think you might have a brain disease causing these problems. Would you like to hear more about this disease?”

Ask them about their reaction. “How do you feel about this diagnosis?” Or “What are you thinking about this diagnosis”. Acknowledge and validate their feelings or thoughts. Patients and families often need to process their feelings and have told us they were unable to take in any other information immediately after being told the diagnosis.

Tell them more information about dementia based on their concerns. Ask what questions they have. Tell them your recommendations and follow-up actions.

International Dementia Clinical Guidelines recognise that people have the right to know their diagnosis, and also the right not to know. People also vary in the amount of information they wish to be told. Families and the person with dementia may hold differing opinions about knowing the diagnosis.

More comprehensive and practical advice on assessing capacity to understand the diagnosis and communicating with the person with dementia and care partner can be found in Pond, D. et.al. (2019)

How can I give patients a sense of hope when I tell them they have dementia?

It is critical to ensure that people given a diagnosis of dementia are given hope for their future. Although dementia is a ‘terminal’ or ‘life limiting’ condition, and whilst it is important to support people to plan for their care (LINK TO SECTION 3), and to plan for their care as dementia progresses (SIGNPOST TO SECTION 4); it is also essential to reassure people that there are ways they can be supported to live their life with dementia positively, and to continue to do the things which promote their health, wellbeing and independence (LINK TO SECTION 5).

You can instil a sense of hope through framing the diagnosis as an opportunity to obtain treatment, rehabilitation and make a plan for moving forward with the symptoms of dementia. While it is important not to over-promise, convey the message that people continue to live their lives, and do things that are important to them with a diagnosis of dementia. Reinforcing to patients and care partners that there is support and help available.