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Because dementia is a terminal illness, grief will inevitably play a role, both for those living with the disease and for the people who love them.
“People say you lose somebody twice when they pass away with dementia and that is so true," said Anthony Arrigo, whose mother Jennifer lived with dementia.
"You grieve for them during the disease and then you grieve for them again when they pass away.”
Note – This story deals with discussions about death and grief. If this article brings up any strong emotions, or you would like support, please call us at any time on 1800 100 500. We are available 24 hours a day, seven days a week, 365 days a year.
A gradual loss
Anthony's sentiments will be familiar to anybody who has cared for a loved one with dementia.
Many aspects of someone's personality may change or disappear as the disease progresses, which is what makes grieving for a person with dementia such a challenging experience.
You are dealing with the gradual loss of the person you love over an extended period and, as a result, your grief will be felt in different ways at different times, often while the person is still alive.
Some of the key moments loved ones are likely to experience grief of some form might be at diagnosis, as the condition noticeably deteriorates, as memories fade or behaviour changes and, of course, after the person passes away.
Slow period of delayed grief
Bronte Parkin, whose wife Glenda lived with dementia, said the transition into aged care was a particularly stressful and sad time for him.
"That change involved the physical loss of somebody I’d been married to for 38 years, because she was suddenly no longer living in our home," said Bronte.
"That is the moment when my grief became very apparent. I believe I remained in an ongoing state of delayed grief until Glenda passed away.”
The loved ones of somebody with dementia can experience various feelings including emotional pain, sadness, shock, disbelief, denial, anger or resentment.
It's important to remember that everyone reacts differently.
No right or wrong way to grieve
There is no right or wrong way to grieve under any circumstance, and this is particularly true with dementia because the journey has so many stages, each of which can bring about a complex mix of emotions.
Bronte said that not everyone understood the emotional reaction of loss when a loved one had dementia, nor did people expect you to be grieving for that loss until their death.
“I feel I now have permission to grieve and people’s understanding seems a lot more compassionate,” Bronte said.
"It's a tough road and for that reason it's so important that the carer makes sure they take steps to look after their own mental health at every stage.”
Miya Bradley (pictured with her father Robert who lived with dementia) recalled how during the early stages of the illness a friend suggested she organise to see a grief counsellor.
"This came as a total surprise to me because I hadn't realised at that point that I was already grieving," Miya said.
"The grief counselling was instrumental, not only in helping me to navigate my own feelings, but also in helping me to positively respond to Dad whenever he would voice his own fears.
“When Dad reached the end-of-life stage, I took the skills I had learned from the grief counsellor to reassure him that he was safe and that everything was going to be okay.
"We were able to make a story out of the dying process by likening it to travelling to a different country.
“I explained that we were only going to be apart for a little while and that we would be together again, just like when I went away to university. And I told him that his mother and father were looking forward to seeing him.
"Approaching Dad's death in this way and offering support, comfort and reassurance throughout the end-of-life stage, turned out to be such a beautiful experience.”
Working through the complex emotions of loss
When a person with dementia passes away you might find yourself experiencing any combination of the emotions people tend to expect following the loss of a loved one, their physical presence and the relationship you had with them.
Or you might discover that you grieved so much during the various stages of the person’s illness that when they do pass away you feel a sense of relief – both for the person with dementia and for yourself.
Or perhaps you might find yourself having no strong feelings at all, at least not in the immediate aftermath.
In cases where those left behind feel relief or a lack of emotion, this can sometimes bring about a sense of guilt.
It is important to accept that you cannot change the way you feel and that everybody copes differently when it comes to loss.
Whatever you do or don't feel is perfectly valid, and there is nothing to feel guilty about.
It is also important to remember it takes time to come to terms with and adjust to the loss of a loved one, and that healing is not always linear.
You might find that your feelings of grief change, evolve, reduce or resurface as time passes. Again, this is perfectly natural.
You will manage your grief in your own way and in your own time.
What support is available for those grieving?
If dementia has touched your life, don't feel that you have to walk this road alone.
If somebody you love is living with or has passed away with dementia, you might find it helpful to seek out some form of support to help you come to terms with your grief.
This could be in the form of accessing information, hearing from others in similar circumstances, sharing your own experiences with others or talking to a professional about your feelings.
The team at Dementia Australia has specialist dementia knowledge, skills and experience, in particular when it comes to the complex feelings of grief felt by loved ones, either before or after the person's death.
From written resources to educational sessions and counselling, we are always here to offer advice, support and a compassionate ear.
Contact the National Dementia Helpline today on 1800 100 500 for more information about grief and dementia, and all the related resources and services we can provide.
Want to read more? Check out these articles:
Jakkie writes about supporting her mother during her final days and learning to navigate through the pain and grief of losing someone you love.
Dementia Australia Family Engagement Counsellor Ken Bartlett provides advice on how to best support someone who is dealing with the grief of dementia.
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