Grief and Dementia

Grief affects you and other famiy members. One of the most frequently asked questions family members ask about when a loved one who has Alzheimer’s disease or other dementia and a loss has occurred is – “What do I say to them?”,  “Do I tell them every time they ask for the person that they have passed away?” Grief is part of life caused by loss. Each person processes feelings of grief differently whether they are of sound mind or living with cognitive impairment.

Grief is a deep mental anguish and sadness caused by bereavement from a death or loss.

Dementia is defined as:  a progressive, degenerative disorder of the brain caused by disease or injury and marked by memory loss, personality changes, and impaired cognitive skills – judgement, reasoning, thinking and planning.

Before answering “what do I say” consider that there are several losses we experience as we age.

The death of family members, friends, pets

Loss of vision, hearing, mobility, driving, some degree of independence

Loss of work, and other roles which provide a sense of purpose

Loss of control and feeling as though “I’m losing my mind”

Spouses and other family caregivers may not even be aware the person is grieving

The person with dementia is then grieving alone or may have a fear of telling how they feel.  Caregivers often will say that losses are “normal” which is reasonably true but does not touch on the emotion of grief. A caregiver themselves may be denying their own feelings of loss and fear. It is that much harder to be a comfort to someone else when you are dealing with your own grief and the many other emotions involved.

In the later stages of Dementia, the person may have fewer memories which connect them to the person who has died. Like with most of us, a new loss brings up past losses which may be harder to understand.  Someone with cognitive and memory difficulties may connect current emotions with past situations and pain can also impact one’s emotional state of mind – but the person, due to the impairment cannot reason it through.

To tell or not; take time to explore your own thoughts and feelings

Are you considering your own needs or their needs?

How great is the impact of the loss on the person? Is it someone they saw daily, weekly or not so often – will they be aware that the person is absent?

Consider where they are in the disease process and what they are likely to be able to mentally process or not.

Support them to express their grief and feelings of loss. Share in general that loss makes people sad, help them to send a sympathy care, or flowers. Give them a photo of the person who has passed.

Following a period of time, which you will judge as it is different for each person, deal with the emotions and facts as on a need to review basis. If they keep asking for the person – you do not need to keep telling them that the person has died and they will not come again. Respond to the feelings, that they love them, want to see them etc. Facts and logic do not apply to someone with a greater degree of dementia and brain damage.

Would you want to be told over and over again that a loved one has died, feel the pain of it, when the information will not “stick” due to the dementia? Use “therapeutic fibbing”. You can say that the person wanted to be here but got called away. It is hard to miss someone, they love you etc. You have some understanding of the person you are comforting and what the loss means to them. After addressing the emotions, you can redirect them to something else. Remember, grief is a personal and individual response to loss and whether you have a cognitive disease or not, your feelings are your own and will be expressed in your unique way.  It does not help to have any expectations of the grieving party. We all grieve in our own way and if we treat a loved one with dementia as we would a friend, we are on the right track.

After all, you probably wouldn’t tell your close friend to snap out of it, sorry for your loss, let’s go shopping or something like that. You would show concern and comfort first. If you need to be away or are to distraught to care for your loved one with dementia, you may consider hiring a caregiver for awhile.

Dementia or cognitive impairment doesn’t mean lack of emotion. Grief is grief, loss is loss and pain is pain. They are just experienced differently at different ages and abilities. Like with other information, the degree of cognitive capacity is congruent with the amount of information relayed.

Article presented as a workshop by Mary Underwood – VP of Memory Care Services – Artis Senior Living