Words can be helpful and uplifting, but also hurtful and frustrating depending on the situation. Here, we look at some words and questions to try to avoid when talking to a person with dementia.
For a person living with dementia, language and communication can become more difficult over time. The type of difficulties a person will face as dementia progresses will be different for each individual.
The type and stage of the person’s dementia will also be a factor. While the person living with the condition may have difficulties with finding the right word, the words that other people use are important too.
Dementia affects everyone differently so it’s important to communicate in a way that is right for the person. Listen carefully and think about what you’re going to say and how you’ll say it. You can also communicate meaningfully without using spoken words.
Good communication can be key to helping the quality of life for the person with dementia. Here are a few of the words and questions it may be best to avoid in conversation.
7 things to avoid saying to somebody with dementia
1) ‘Remember when…?’
While it can be tempting to try and jog the memory of somebody living with dementia, this kind of question may highlight the fact that the person has memory problems. It can also sometimes feel like the person is being tested.
This can be a frustrating or painful experience, and there’s also no evidence that prompting the person in this way will help them to recall or hold on to memories. It can be pleasant and comforting to talk about the past, however, it’s usually more helpful to lead the conversation and allow the person to join in.
Try this instead:
Instead of posing a question, try leading with ‘I remember when…’. That way, the person can search their memory calmly without feeling embarrassed, then join in if they like.
2) ‘I’ve just told you that’
It can be difficult answering the same question several times, especially when you are trying to keep frustration or upset from your voice.
However, reminding the person that you have just answered their question will not help them retain the information for next time, it is likely to just remind them of their condition. This can be distressing for you both. Bear in mind, that for them, it is likely to feel like the first time they have asked the question.
Try this instead:
Try to remember that the person cannot help repeating themselves. It is important for them to feel heard and understood.
Answer repeated questions calmly and patiently, with an even tone of voice. If you feel the need, take a break, and remove yourself from the conversation for a while.
3) ‘Your brother died 10 years ago’
A person living with dementia may forget about a past bereavement or ask for somebody who has died. Reminding them of a loved one’s death can be very painful, and they may react as though hearing the news for the first time all over again.
How to respond to these types of difficult questions will vary for different people in different circumstances, however, it’s always important to show sensitivity and minimise any distress.
Try this instead:
For some people, encouraging them to talk about the person they are asking about can be comforting. Distraction techniques can be useful, although try not to avoid the question if they keep asking, as this can cause the person to feel more anxious.
Find out how the person is feeling, sometimes asking about a particular family member or friend is due to the person having an unmet need, such as wanting comfort or reassurance.
4) ‘What did you do this morning?’
Avoid asking too many open-ended questions about the past, as it could be stressful for a person with dementia if they can’t remember the answer. While it might seem polite to ask somebody about their day, it’s better to focus on what’s happening in the present.
Try this instead:
Instead of asking them about their day, speak briefly about your day and give them time to ask you questions about it.
They might then offer information about what they have done. Talk to them about the present and use items in the environment such as photos or ornaments to stimulate conversation.
5) ‘Do you recognise me?’
It can be distressing when somebody with dementia doesn’t recognise you, especially if you have a close relationship with them. Remember that it is likely to be upsetting for them to not recognise people around them too.
Asking the person if they know who you are can make them feel guilty or anxious if they don’t remember or offended if they do.
Try this instead:
The way you greet somebody with dementia might change depending on the stage of their condition – judge for yourself but keep it friendly. A warm hello could suffice, or it may help to say your name and your relationship to them each time.
6) ‘Let’s have a cup of tea now, then after that we can go for nice walk and get lunch and something else to drink in that café you like next to the big church in town.’
Long, complex sentences can be difficult to grasp for somebody with dementia. It’s difficult to process several ideas at once as cognitive abilities slow down, so it’s better to give directions or instructions one step at a time.
Try this instead:
Use short, simple sentences as much as possible. Avoid speaking too much in loud or busy environments, and wait until you have the person’s full attention before you start. During a conversation, give the person enough time to process what you are saying.
7) ‘I’ll just help you use your little spoon there, love?’
‘Elderspeak’ – which can involve talking in a high-pitched voice, using words like ‘love’ or ‘deary’, and generally speaking to the person like they are a child – should be avoided. This can be patronising and infantilising for a person with dementia.
Try this instead:
Always remember the person behind the dementia. It’s fine if the person needs you to speak slower than usual, but try to keep your tone of voice the same as with anyone else. Some people may like being called ‘love’ or ‘dear’, but unless you know the person it is usually best to use their name instead. This helps keep their dignity intact.
DRUG’S UPDATE
The Alzheimer’ Society also expect decisions from the drug regulators later this year on whether new drugs lecanemab and donanemab that can slow down early Alzheimer’s will be approved in the UK.
Lecanemab
How does lecanemab work?
Lecanemab is a disease modifying immunotherapy drug. It works with the body’s immune system to clear amyloid protein build up from the brains of people living with early-stage Alzheimer’s disease.
These amyloid protein build ups are thought to be toxic to brain cells, causing them to get sick and eventually die, leading to the symptoms of Alzheimer’s disease.
Immunotherapies are already used in medicine, for example in the treatment of some cancers.
More specifically, lecanemab is an antibody treatment. Antibodies already exist in the human body – they are a type of protein produced by the body’s immune system to fight against disease.
Lecanemab is given to patients intravenously, which means into a vein through a drip bag. It targets amyloid protein in the brain and then ‘triggers’ the brain’s immune system to clear it out.
Three promising drugs for treating Alzheimer’s disease bring fresh hope
Research
There are 141 drugs being tested in clinical trials for the treatment of Alzheimer’s disease. 78% of these drugs are designed to try and slow down how quickly the disease progresses. We examine the three most promising drugs, lecanemab, donanemab and remternetug and summarise their journeys so far.There are 141 drugs being tested in clinical trials for the treatment of Alzheimer’s disease. 78% of these drugs are designed to try and slow down how quickly the disease progresses. We examine the three most promising drugs, lecanemab, donanemab and remternetug and summarise their journeys so far.
What is the latest news on lecanemab?
Approval – Lecanemab was approved by the US Food and Drug Administration (FDA) as a treatment for early Alzheimer’s disease in January 2023. This means that it can now be given to patients with early Alzheimer’s disease in the USA.
The drug will be marketed under the name Leqembi and has been approved using the FDA’s Accelerated Approval Pathway. This allows approval decisions to happen faster and is for treatments that tackle serious conditions where there is a unmet medical need.
Since the announcement of the decision, the drug company have also submitted an application to the European Medicines Agency for approval in the EU.
Clincial Trials
Late last year, Eisai (the company that makes lecanemab) released the full results of lecanemab’s phase 3 clinical trial called Clarity-AD at the Clinical Trials on Alzheimer’s Disease (CTAD) conference in San Francisco on the 29th November 2022.
Clarity-AD is a phase 3 clinical trial involving 1,795 people. The trial involved people living with early-stage Alzheimer’s disease who have amyloid protein build ups in their brains . Half the participants were given lecanemab and half received a dummy drug over 18 months.
The trial showed that lecanemab slowed down the speed at which memory and thinking skills got worse by 27% in people taking the drug compared to people on the dummy drug.
Researchers estimate over 18 months the drug may slow the progression of the condition by about 7 months. The research team also found that the drug slowed the decline in quality of life by up to 56%.
Importantly, the drug reduced the amount of amyloid protein present in the brain. Amyloid protein levels were also reduced in the blood and spinal fluid.
Clinical trials for lecanemab will continue so that researchers can understand the effects of taking this drug over a longer period of time.
Who could benefit from lecanemab treatment?
Lecanemab is a treatment for people with early-stage Alzheimer’s disease who have amyloid in their brain.
This means people with other types of dementia, or in the later stages of Alzheimer’s disease, are unlikely to benefit from this drug.
Does lecanemab have any side effects?
Like all drugs, lecanemab was found to have some side effects.
During the clinical trial, some people taking lecanemab experienced reactions to having the drug infused, while some others were found to have swelling or microbleeds in the brain in response to lecanemab – known as Amyloid Related Imaging Abnormalities or ARIA.
The majority of people who experienced ARIA had no symptoms and these changes in the brain were only detected using MRI brain scanning.
Safety is closely monitored and is of paramount importance during any clinical trial.
The drug regulatory bodies will scrutinise the lecanemab safety data and use it to make a decision about whether lecanemab is both safe and effective as a treatment for people living with early-stage Alzheimer’s disease.
When will lecanemab be available in the UK?
At this stage, lecanemab remains an experimental medicine that is not available to patients in the UK outside of clinical trials. Before lecanemab can become available for use, drug regulatory bodies will make a decision as to whether or not lecanemab is both effective and safe as a treatment for early Alzheimer’s disease.
The approval of lecanemab by the FDA in January 2023 was a big step but does not affect whether lecanemab will be available in the UK.
The drug company submitted an application to the European Medicines Agency (EMA) for approval of lecanemab in the EU. We expect the EMA to make a recommendation to the European Commission on whether lecanemab should be approved for use in Europe in the first half of 2024.
For lecanemab to be available in the UK, it would have to be approved by the Medicines and Healthcare products Regulatory Agency (MHRA) in the UK. Following Brexit, the Government has stated that the MHRA will follow decisions made by the European Commission until January 2024.
We do not yet know whether lecanemab will be approved for use in the UK.
Approval by the MHRA doesn’t mean that lecanemab will be available on the NHS. For that to happen, it would also need to be approved by the National Institute for Health and Care Excellence (NICE). For this decision, NICE will consider the benefits and risks as well as take into account how cost-effective the treatment is.
Donanemab
Donanemab slowed how fast memory and thinking get worse by more than 20%. The evidence from the trial suggests that the earlier in the disease the treatment was given, the greater the benefit. This means that there was more slowing in memory and thinking decline in people with fewer changes in their brains associated with Alzheimer’s disease.
This means a delay in the progression of Alzheimer’s disease by 4.5-7.5 months over the 18 months of the trial.
Also after one year on donanemab, nearly half of the people taking it had no decline in memory and thinking skills.
People taking donanemab also had a 40% reduction in the decline of their ability to carry out daily activities, such as managing finance, driving and carrying out hobbies.
These are exciting results, but we don’t fully know what this will mean in the long term for people who have taken donanemab as the trial only lasted 18 months.
Also, 91.5% of the participants in the trial were from a white background, so we need more diversity in clinical trials to prove that these drug treatments will work for everyone with early Alzheimer’s disease.
These promising drugs for treating Alzheimer’s disease bring fresh hope
There are 141 drugs being tested in clinical trials for the treatment of Alzheimer’s disease. 78% of these drugs are designed to try and slow down how quickly the disease progresses. We examine the three most promising drugs, lecanemab, donanemab and remternetug and summarise their journeys so far.There are 141 drugs being tested in clinical trials for the treatment of Alzheimer’s disease. 78% of these drugs are designed to try and slow down how quickly the disease progresses. We examine the three most promising drugs, lecanemab, donanemab and remternetug and summarise their journeys so far.
Is donanemab safe?
As well as testing the effectiveness of donanemab, the clinical trial also tested the safety of the drug, with monitoring for bad side effects.
As with all drug treatments, there have been some side effects associated with donanemab.
These included headaches, reactions to the intravenous drip, and swelling or microbleeds in the brain known to be related to amyloid.
The vast majority of side effects (82.4%) were either mild or were detected in tests but didn’t cause any symptoms
Unfortunately, there were three deaths (0.4% of participants) in the trial related to brain swelling and 1.6% of participants had serious symptoms relating to brain swelling.
Safety will be carefully considered alongside the benefits of the drug by regulatory authorities. They will decide whether the drug should be made available to people with early stage Alzheimer’s disease.
How does donanemab work?
Donanemab is given to patients intravenously, which means into a vein through a drip bag. It is an immunotherapy drug developed by a pharmaceutical company called Eli Lilly. Immunotherapy drugs are already used in medicine for treating different diseases, like cancers.
They tell the body’s immune system to attack foreign cells or proteins and get rid of them so they can’t cause any more problems. In the case of donanemab, it teaches the immune cells to recognise and remove a protein called amyloid, which builds up in Alzheimer’s disease.
The amyloid protein build-ups are thought to be toxic to brain cells, causing them to get sick and eventually die, leading to the symptoms of Alzheimer’s disease.
Three-quarters of the people taking donanemab had amyloid successfully cleared from their brains by the end of the trial.
How is donanemab different from lecanemab?
Donanemab and lecanemab are both immunotherapies. Although both drugs target amyloid protein, they target it at different stages in how it builds up in the brain.
Lecanemab targets amyloid as it begins to form fibres, whereas donanemab binds to amyloid once these fibres have clumped together to become a larger build-up or plaque in the brain.
This may be partly why we see a difference in how effective both drugs are at slowing down the disease.
Who would be eligible to take donanemab?
To be eligible for donanemab treatment a person would need to be in the early stages of Alzheimer’s disease and have amyloid protein buildup present in their brain. This is shown using amyloid PET scans or testing of spinal fluid.
Trials have tested donanemab in people with early stage Alzheimer’s disease.
Researchers believe these types of drugs may not be effective for people with moderate or severe Alzheimer’s disease, as the amyloid protein will have already caused too much damage to the brain for the drug to help.
If it is approved in the UK, donanemab is likely to only be available for people living with early stage Alzheimer’s disease.
When might donanemab be available in the UK?
To be available for use in the UK, a drug needs to be approved for use by the Medical and Healthcare Products Regulatory Agency (MHRA) But this only allows it to be legally used in the UK.
