Quite a few funerals I conduct are related to dementia. Either the person who has died or a living family member has been diagnosed with the disease. This raises specific questions and thoughts around funeral arrangements, such as:
“Should we take mum to the funeral? She will not remember anything of it”
“We don’t need to ask dad about what mum liked because he can’t remember”
“We are worried that nan behaves inappropriately at the funeral so it might be best to leave her at home”
How to include a person who is living with dementia when organising a funeral?
In the below I will explain that, depending on the personal circumstances, it is very well possible to include someone living with dementia in funeral arrangements and that, in many cases, there is no reason for them not to attend a funeral of a loved one.
Dementia affects every person differently and there are no standard guidelines to follow. There are more than 100 types of dementia and how the disease develops will be different for every person. There is no ‘standard’ type of dementia.
There are, however, some key messages to guide you, and some best practice tips that will help find a way on how to include someone living with dementia in the funeral arrangements. In the following, I will share these with you.
The key messages are part of the Dementia Friends Information session developed by Alzheimer’s Society. The best practice tips are based on talks by Ruth Trout, Senior Lecturer in Acute Care at Buckinghamshire New University, and Reverend Penny Seabrook at a dementia seminar hosted by Mortlake Crematorium and Chelsea Funeral Directors September 2018, and conversations with Patrick Gray, Dementia Friendly Communities Co-Ordinator for Haringey and Merton.
Five key messages about dementia
Earlier this year I became a Dementia Friend as I wanted to deepen my understanding of dementia and learn how to better support the families I work with. Impressed by the powerful messages and call to action included in the Dementia Information Session, I decided to become a Dementia Champion to host sessions myself and to inspire other people to act more dementia friendly.
The Information Session teaches five key messages about dementia:
- Dementia is not a natural part of aging
- Dementia is caused by diseases of the brain
- Dementia is not just about losing your memory – it can affect thinking, communicating and doing everyday tasks
- It’s possible to live well with dementia
- There’s more to the person than dementia
For the purpose of this article I will focus on the last three messages. What do they teach us, and how do they help when organising a funeral?
- These messages focus on the person rather than the disease.
- They are an invitation to look at the abilities rather than the disabilities of someone living with dementia.
- They also teach us that it is important to tune in with the person living with dementia.
- How to best communicate with them becomes clear when you interact with them in a curious and mindful way. You might, for example, need to repeat what you say, use visual aids, or use shorter sentences than you would usually do.
Another important and rather mind blowing insight I got from the dementia training is that the someone might forget facts, data and names, but that the emotions that correspond to factual events will stay much longer with them. Someone might forget that they have been to a funeral. They might forget what’s been said and even that their loved one has died. But if the music played at a funeral triggered warm and loving emotions, this will stay with them.
How to create a dementia-friendly funeral
Let’s look at two moments in the process of arranging a funeral: organising a funeral and the funeral service.
1. Organising a funeral
Funerals are increasingly becoming a personalised event. Choices are made based on what the person who has died would have liked and what gives comfort to the living. This includes tone of the service, music choices, readings, and rituals.
A good funeral is carefully designed in cooperation with the funeral director and the officiant who will be leading the funeral service. These funeral professionals will engage with the family members or other people who are arranging the funeral, listen to their needs and wishes, and offer sensitive and fitting options.
Someone living with dementia can be very well involved in these discussions. They may, for example, give suggestions for music to be played and they may share memories to be included in a eulogy or tributes.
Depending on the circumstances, you may need to tailor the way you communicate with the person living with dementia to ensure they understand you and can respond to your questions. It’s important to be clear and avoid confusion. For example, you may need to:
- Speak slower than you usually do
- Repeat your questions, if needed, many times
- Make eye contact
- Use body language to put emphasis on what you are saying
- Use simple words and short sentences
- Avoid euphemisms (phrases like ‘he’s in heaven’ or ‘passed away’ are not very helpful)
For someone living with dementia it may be difficult to answer open questions. If, for example, you would like to understand what music their loved one liked, you may not receive an answer when you ask: ‘What songs would they like?’ Instead, you could listen to some songs together until you get a response: ‘My wife loved this song … this was the song we had at our wedding’ or even until it’s just a song that they like and react to.
It is important to create a supportive environment so the person living with dementia feels relaxed and safe. Having a conversation in their own home, for example, can be a better idea than asking them to come to a place they don’t know. Another advantage of having a conversation in their own home is that it gives prompts for discussion. A photo may trigger a memory, a cd in the music player might give a clue of what music they enjoy listening to.
Should you tell someone that their loved one has died?
As dementia affects people in different way, there is no straight answer in terms of yes or no, right or wrong. If someone is in the early stages of dementia it may help them grieve. Someone in the later stages of dementia will hear it and feel all the emotions that come with it, and will experience this every time again when you tell them.
In general, it is widely believed that protecting a person with dementia from the truth can cause confusion because the story will not match the reality.
Alzheimer’s Society suggests the following:
“Use body language to express your sadness, cuddle them or hold their hand. Keep the sentences short and do not give too much information at once. Avoid using euphemisms such as ‘passed away’ or ‘at peace now’. Allow plenty of time, and be prepared to frequently repeat the information.”
If appropriate, remind the person with dementia of the death of a loved one by reading sympathy cards or messages.
2. The funeral service
According to Alzheimer’s Society, attending the funeral is generally the best option. A good preparation will help both the person living with dementia as the other members of the family.
It’s important that the person is being supported and looked after by someone they know. A carer might be good option as this allows the other family members to focus on their own thoughts and feelings.
The person with dementia might react or do something unexpected. Agree that this is alright and you, the funeral director and officiant will react as appropriate.
A traditional approach (people wearing black, traditional rituals) will help in understanding that it’s a funeral as they might recall the clues. Playing familiar music or hymns will help make them feel included, and an order of service with a photo is a good visual reminder.
Seeing other people grieve will also help in making sense of the event.
Continuing bonds: memory box
To continue the bond with the person who has died you may create a memory box for the person with dementia. This box can be a treasured place to keep photo’s, CD’s or other items that remind the person living with dementia of their loved one, and may continue to trigger memories to share.
Share your thoughts and experiences
I hope this article has given you a better understanding of how to include a person living with dementia when organising a funeral. Have you arranged a funeral where someone with dementia was involved? How did you include them? If you have any stories that might help others please share them with us.
Further reading and useful websites
- Loss and bereavement in people living with dementia. Information sheet, developed by Alzheimer Scotland in partnership with the University of the West of Scotland.
- Dementia Friends: an initiative by Alzheimer’s Society. Dementia Friends is the biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, acts and talks about the condition. Find out where Dementia Friends Information sessions in your area are being held and become a Dementia Friend today! You will learn more about what it is like to live with dementia and how to turn that understanding into action.