The grief that follows a diagnosis of dementia in a loved one is unlike grief in many other terminal illnesses. Over the often long and uncertain course of dementia there are progressive losses, each of which may trigger grief. Grief is felt for the person who is being lost now as well as in anticipation of future losses and the physical death to follow.
Grief and the losses in dementia
Initially, a diagnosis of dementia in a loved one may come as a shock, but it may also explain changes that you had been observing. Life may be able to go on pretty much as before, but may feel more unpredictable, less certain.
As dementia progresses people describe gradually losing the person they knew. This may mean a loss of companionship and shared memories, loss of intimacy and the loss of shared decision-making. Watching as the abilities you have admired in that person are lost can be very hard. And a point may come when you no longer recognise or are recognised by the person you loved.
In some people with dementia there may be changes in their personality and in their behaviour, such as rambling speech, swearing and even physical or emotional aggression. However, some may also demonstrate a gentler side of themselves as the illness progresses.
Dementia can take a long and unpredictable course, and during this time carers describe losing contact with friends and even family members and becoming increasingly isolated. If you are caring at home for someone with dementia you may have had to give up other roles. Some carers will stop working or need to take period of leave from work. Caring can make significant demands on your physical energy as well as emotional responses. You may feel you are on duty continuously, and feel resentment at your loss of freedom, and then guilt for having these feelings. You may feel uncertain about how best to manage or be fearful about whether the situation can ever be resolved.
All these losses contribute to feelings of grief, but it is an ambiguous grief that can continue even when the person is physically present but no longer emotionally connected to you. You may be unable to make sense of your feelings and find it difficult to adjust to the changing circumstances.
Others may not always recognise your feelings as grief, and this may make you feel even more isolated.
Besides grief, sometimes people caring for someone with dementia can experience anxiety and depression, or even suicidal thoughts. If you feel this might be your situation, it is important to seek help from your GP or The National Dementia Helpline (Monday to Friday 8.00-8.00) or if this is a crisis call Lifeline.
Handing over care
Sometimes, caring for someone with dementia at home may become impossible, even if support is provided by family and friends or Aged Care services.
The decision to hand over care to a residential aged care facility can be a very difficult and stressful one with many mixed emotions, particularly if the relationship has always been challenging, or if there is disagreement within the family about the decision. There can be anxiety about the level of care offered in residential care which can lead to a sense of guilt, as well as grief for the loss of the caring role.
However, there can also be a sense of relief from the burden of caring, and it may be possible to spend more meaningful time with your loved one once you are not carrying all the caring responsibility. You can still play a key role in their care if you wish.
Grief when the person dies
As dementia progresses, physical changes and increasing frailty may signal that death is approaching, but the timing can still be unpredictable.
There may be decisions to be made about possible life-prolonging treatments. Discussions within a family about what the person would wish near the end of their life are helpful, especially if conducted before cognitive abilities worsen.
If you are able to feel prepared for death and able to say ‘goodbye’, this can help how you feel afterwards. But death can still come as a shock.
For many people there is a sense of relief at the end of suffering, as well as grief that the person they loved and cared for is gone.
Things that can help
Knowing what to expect during the illness is helpful, so ask questions and use the resources that are offered.
Keeping in touch with family and friends, celebrating family events, and keeping social connections are important. The sensitive use of humour to navigate tricky situations may be helpful.
Advance Care Planning and discussing end of life wishes early in the course of the dementia, while the person still has cognitive ability, can be a way for them to have a say in the course of their future care. These discussions can relieve a lot of heartache and uncertainty later for both family members and care providers.
Don’t be afraid to ask for help with the burden of caring and for your feelings. There are over 1.5 million Australians involved in caring for someone with dementia. You are not alone and there are dementia services that can help, including grief support.
Understanding the grief of someone living with dementia
Many people with dementia are aware of and experience a sense of loss as their abilities and functioning change. This grief may be unrecognised as health care professionals and care givers necessarily focus on medical management.
The question of whether to tell a person with dementia when someone they knew or loved has died is not uncommon. There is no clear answer for this, and the person’s ability to understand will probably influence your thinking about this.
Not telling may create anxiety for the person with dementia about the absence of their loved one, and cause them to wonder or worry.
If you do break the news, the person with dementia may fail to take it in at all, or they may experience grief each time the bereavement becomes apparent. Sometimes they may invent other reasons for why the person is now missing. Changes in the brain may make it difficult for the person with dementia to express their feelings, and they may instead show their grief through behaviour changes.
How you tell a person with dementia about a loved one’s death may be important. Taking time to sit quietly, perhaps holding their hand so they understand more from how you are behaving, can be a gentle approach. At times ‘white lies’ may be the kindest option.
Asking your health professional for advice, or contacting dementia-related services, can help.
Get help here
National Dementia Helpline 1800 100 500
A free confidential phone and email information and support service. It operates from 9.00am to 5.00pm Monday to Friday excluding public holidays.
For the person with dementia
Diana Chan et al. Grief reactions in dementia carers: a systematic review. Int J of Geriatric Psychiatry, 2012
Moore et al. Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods. BMC Geriatrics (2017) 17:135
Kesstan Blandin and Renee Pepin Dementia grief: A theoretical model of a unique grief experience. Dementia (London) 2017 January 16 (1): 67-78
Page last updated: 24 March, 2021