It started with awareness …
When I first met a family where the wife of the person who had died was living with dementia, I realised I did not know much about the disease. Her children were not sure if she should come to the funeral as they thought she would not remember and may behave inappropriately. I talked about this with the funeral director involved and they were not sure either.
… followed by learning …
I started to learn more about dementia, became a Dementia Friend and a Dementia Champion and found out that people with dementia, in most situations, can be very well included in funeral arrangements and on the day of the funeral.
By 2025, 1 million people will be living with dementia in the UK, and this number is growing. Many of them will experience one or more bereavements. Including them in the funeral arrangements and the funeral service helps them express their grief and pay tribute to the person who has died.
Dementia is a disease of the brain. It is progressive. There are more than 100 types of dementia and how the disease develops will be different for every person. If you would like to learn more about dementia before reading on, please refer to the website of Alzheimer’s Society and to a previous blogpost I wrote about the subject.
… and sharing good practice
I wondered to what extent other funeral celebrants, funeral directors and crematorium staff tailor their services to people with dementia. I was keen to learn good practice tips, and curious to understand what literature was available and the advice given in these resources.
This article gives advice on how to include people with dementia when arranging a funeral and on the day of the funeral service.
This is based on resources published by, amongst others, Alzheimer’s Society and Cruse Bereavement Care (references the end of this article), as well as on surveys completed by funeral professionals and carers and in-depth interviews with people who have experience with dementia-friendly funerals. Insights have been shared at the International Conference for Palliative Dementia Care 2019 in Belfast and a selection of graphs and slides are used in this article.
This article is aimed at creating awareness, give initial insights and inspire people to learn more about the subject. It addresses the following questions:
- To what extent do funeral professionals include people with dementia in funeral arrangements?
- Why it is important to include people with dementia, where possible, in funeral arrangements
- How to include people with dementia when organising a funeral?
- How to include people with dementia on the day of the funeral?
- What can crematorium and burial sites do to make people with dementia feel welcome?
- What can YOU do?
1. To what extent do funeral professionals include people with dementia in funeral arrangements? (Survey results)
I developed a survey to learn if and how funeral professionals tailor their services to people with dementia. The following graph summarises the main insights:
- 80% Of the respondents were funeral professionals (other 20% were carers, family members of people with dementia, or other healthcare professionals)
- Half of the funeral professionals were Dementia Friends
- 70% of the funeral professionals said they tailor their services to people with dementia
Interestingly, some who identified themselves as Dementia Friend did not tailor their services.
Reasons mentioned for not tailoring services:
- It hasn’t come up yet
- Not sure what to do
“I would tailor them, but it hasn’t come up yet. On one occasion the widow was not involved at all as she was far into Alzheimer’s and her family felt she would not understand.” (survey respondent)
“Yes, I need to consider how I can make it more relevant for them but I am unsure the best way forward.” (survey respondent)
Learning about dementia and how to tailor services to this audience is not standard included in the training or induction programmes that funeral professionals receive.
It depends on their own initiative if they develop the knowledge and skills and include dementia-friendly services as part of how they work.
2. Why it is important to include people with dementia in funeral arrangements
In additional to the survey, I had six in-depth interviews with funeral professionals and carers.
All respondents and interviewees commented that it is important, where possible to include people with dementia in funeral arrangements and on the day of the funeral. This is supported by the literature If found on the subject.
Actively including people in funeral arrangements helps them express their wishes and thoughts for the funeral and the emotions that come with the loss of the person who has died.
Each person’s experience of bereavement will be unique to them and will depend on they individual relationship and how much contact they have had with the person who has died. How people express their grief will be affected by a variety of factors, including the extent of dementia, loss awareness, the relationship with the person who has died and how well the person with dementia can express their grief.
There is not a single approach that works for all. Dementia is an umbrella term, and how it affects a person will vary. It is therefore important, before giving any specific advice, to understand what works for that person and take a person-centred approach.
3. Person-centred funeral arrangements
The survey, as well as additional in-depth interviews, resulted in some very valuable good practice tips on how to include people with dementia in funeral arrangements, both from funeral professionals and experts by experience (carers, family members, health professionals).
Things to consider before meeting the person with dementia
Before meeting the person with dementia a funeral professional may have a meeting with the family, or someone else who knows the person with dementia well, to understand where and when it’s best to meet them and to learn more about their personal story.
Place. Where is the best place to meet?
- Is the person with dementia able to travel to the funeral home?
- Are the facilities at the funeral home dementia-friendly? (for example, is parking space available when they come by car, is public transport nearby, does the home have clear signage?)
- Is it better to meet at their home?
Time. When is then best time to meet?
- What time of the day are they feeling at their best and are rested?
- When do they have their routine activities (medications/meals/appointments/resting time etc)
Personal situation. What is their personal story?
- What are their abilities? What may make them feel relaxed or agitated?
- Learn more about the life and background of the person with dementia and the relations they had with the person who has died. This helps find clues to trigger memories.
When meeting the person with dementia
If at all possible, tell the person with dementia that someone close to them has died. Tailor your communications to help them understand what you are saying to to connect with them, for example by:
- Help them feel relaxed with non-verbal body language. Hold hands if appropriate.
- Stay calm
- Tailor your communication style:
- Use short sentences
- Talk slower than you would usually do
- Ask one question at the time
- Make eye-contact
- Use explicit language, avoid using euphemisms (such as ‘passed away’ or ‘he is in heaven’)
- Allow for time to explain things and discuss questions and be prepared to repeat the information
People with dementia may forget the fact that someone has died, but what stays with them is the comfort and sense of love that you have shared when telling them about a death.
Techniques that help communicate with person with dementia:
Reminiscence work: sharing the past experiences of the person through pictures, music, storyboards or objects that are related to these memories.
“We explain everything clearly and ask only one questions at a time in order to allow clients enough time to process information.” (survey respondent, funeral director)
“If the person with dementia is willing and able to speak to me, I will always meet them face to face – in a setting where that are comfortable – and allow plenty of time for our meeting; ensuring that we have at hand memory aides such as music and photos.” (survey respondent)
Validation technique: respond to the underlying emotion. If someone is upset you may respond by saying: “You sound as you are really missing her. What do you miss about her?”
If attending the funeral service is to upsetting, a farewell ritual on a different moment may be the right way for the person with dementia to say their farewells.
More about how to use reminiscence and validation techniques can be found in this article.
Multi-sensory approach. When the dementia is at an advanced stage, a multi-sensory approach may help to explain that some has died and what happens at the funeral. Voorlezen-plus® (‘Storytelling-plus’) is a Dutch project that uses this approach. It is a case that contains 12 large, solid ‘pages’. Each page tells a part of the story of a funeral. Each page has an object that you can see, feel, touch, hear, smell, or taste, such as a photo, marble heart, coffin, sand, flowers, hearse etc. It may help the person with dementia say their farewells and grieve.
Preparing a person with dementia for the funeral
If possible, go and visit the crematorium or burial site before the day of the funeral to check layout and logistics.
Officiants may write their scripts with the person of dementia in mind. Send the draft script to the person with dementia or the family to check if it is inclusive and won’t trigger upsetting thoughts or emotions (for as far can be predicted).
Funeral directors and officiants may back up all arrangements in writing and reconfirm verbally with call on the day.
Explain what happens at a funeral. The below is a page from the guide Bereavement, loss and dementia, by Cruse Bereavement Care and Alzheimer’s Society Cymru:
4. On the day of the funeral
Whether bringing a person with dementia to the funeral service is a good idea depends on the circumstances. If it will upset them too much, or if it is too difficult for the family to organise, it may be better to organise a different moment for them to say their farewells.
If possible, attending the funeral is the best option as this will help the person with dementia understand that some has died and say their farewells. Seeing other people grieve will also help in making sense of the event.
It is important to support the person with dementia whilst attend the funeral service. It may be good to ask a carer or someone else to take care of the person with dementia so the family can focus on their own grief. A crematorium staff member or funeral director may nominate someone to attend the person with dementia and their carer to support if needed.
The officiant may greet the person with dementia before the service and explain or remind them who they are.
Other good practice tips, as shared by survey respondents and interviewees:
- Allow time to settle/explore the place
- Be mindful where they are seated – close to the exit doors so they may leave if they get too agitated or rather at the front, with the other relatives so they feel comforted by their presence
- Be flexible and understanding when the person with dementia interrupts the service
- Include elements that they will relate to (hymns/black clothes/a traditional set-up)
- Give them something to hold (an object that gives comfort, or that reminds them of the person how has died)
- Include music that the person with dementia knows or a singalong that they can join into
- An order of service with photo may be a good visual reminder
“We bring a wheel chair, folding chair and travel rug at every funeral” (survey respondent)
“A lot of it (being inclusive) has been through music, talking with the person who has dementia about the songs that are meaningful. Where possible, I’ve suggested to the family to make that song a singalong during the service, and more often than not, the person with dementia has joined in”. (survey respondent, celebrant)
“If a person living with dementia interrupts the service, I ad lib in a relaxed and inclusive way to welcome their contribution and allow them to express their emotions.” (survey respondent, celebrant)
“I arranged for one elderly man with dementia to play his harmonica at the woodland burial of his wife. He played a tune that he used to play for her when he was courting. As it was music – it was his way of communicating his love when he struggled with the words. As is often the way, music memory remains when other is lost. It was fulfilling for him and his family members and one of the rawest and most beautiful things I have witnessed at a funeral.” (survey respondent, celebrant)
5. Crematorium and burial sites
I also had a closer look at crematorium sites. How dements-friendly are they, and how can we improve layout and logistics to make them dementia-friendly? In the area where I live (North London), crematoria sites are not designed with people with dementia in mind.
Survey results and interviews highlighted some simple interventions that can be made to help people with dementia find their way and make them feel welcome.
In general, crematorium sites, especially the grounds, are peaceful and tranquil places and they may help feel the person with dementia feel at ease.
People may get anxious getting there and finding their way on site. Getting there early helps to orientate and make themselves at ease. If the chapel is available, they may take their seat so they don’t have to interfere with big crowds.
A visual story guide of the crematorium or burial site helps people with dementia find their way. This visual story guide could include:
- A map on where to find the crematorium or burial chapel, including address, transport links and phone number of the crematorium or cemetery office
- Clear photos of the chapel and facilities
- A short description on what to expect on the day of the funeral
Other things to consider to make the site dementia-friendly are:
- Signpost main spaces (ideally indicated by symbols and words)
- Have trained staff available to welcome and assist in case of questions
- A warm, comfortable welcome room and hot drinks facilities
- Decent facilities
- Use different colours to highlight doors to different areas
- Make sure the floor is even so there’s reduced risk of trips and falls
- Patterns can be confusing
- No mirrors as people may not recognise the reflection as themselves which may be upsetting
6. Insights and recommendations: what can YOU do?
Including people with dementia is not rocket-science. Key is to learn to understand what works for them and to adapt the funeral service and environment so they feel safe and included.
If funeral professionals and the family/carers work as a team, guided by the person with dementia, a funeral can be a positive experience for all involved.
So what can YOU do?
- Read about dementia (the resources in references below are a great starting point)
- Talk to people with dementia, their family members and carers
- Become a Dementia Friend, or a Champion for your organisation
- Open up the discussion with your fellow funeral professionals
- Create a Visual Storyguide
- Go on a Virtual Dementia Tour
Together we can make a positive difference for people with dementia.
Remember the case study at the start of this article? This is what could happen and why this topic is so important:
Bereavement, loss and dementia. Cruse Bereavement Care. In partnership with Alzheimer’s Society Cymru.
Loss and bereavement in people with dementia. Information sheet by Alzheimer Scotland and Action in Dementia, IS 42 Dec 2011.
Good practice design of homes and living spaces for people with dementia and sight loss, Corinne Greasley-Adams, Alison Bowes, Alison Dawson and Louise McCabe.
How to have a dementia-friendly funeral, Rosalie Kuyvenhoven, www.ritualstoday.co.uk. Last accessed 14th May 2019.