The passing of a loved one is difficult for anyone, but it is especially challenging for someone with dementia. People with dementia have a lot of "minute deaths" in the course of their disease — things like losing independence and the ability to drive, read, cook, or enjoy hobbies.
Memories and relationships are huge losses. For most, the pain of the loss will most often eventually transform into comforting memories. But for someone with dementia this process is often unreachable. A person with dementia may have problems with reasoning that can affect how they understand grief, but this does not mean they are unable to feel emotions.
It is hard for family members to know how and when to tell the person with dementia about the death. If they are in the later stages, they may be less likely to be able to understand so it may not be appropriate to tell them. If the person is in the early stages of dementia, it is usually best to tell them about the death and see how they react to the news.
*Tell the news as soon as possible. They will sense that something is wrong and need information to understand.
*If you are too emotional to talk to them, find someone else —a friend, other family member or Caregiver.
*Choose a time to talk when the person with dementia is well rested. Allow plenty of time for the conversation and be supportive.
*Use short, simple sentences. Don’t give too many details; this may overwhelm them. Try not to give too much information at once.
*Answer questions as honestly as possible. Be prepared to repeat information. Try to be patient.
*Use clear words like “died” instead of “passed away” or “at peace now.” Explain what has happened clearly and simply. Don’t use euphemisms like ‘losing’ someone or saying they have ‘gone to sleep’, as they can be misunderstood. Speak in the past tense about the person who has died. For example, “I loved Mom’s lasagna.” Try not to protect the person from the truth by suggesting that the person who has died is away and will return later. This can cause worry and agitation later when the person does not return.
*Consider involving the person with dementia in funeral planning. This will help the death be more real for them. They may recognize the rituals around death and act appropriately.
Each family should find what works for them, and then try to be as consistent as possible. Make other family members and visitors aware of your plan and ask that they keep to the plan. There is no right or wrong answer. Always do what you think is best with patience, honesty, empathy and love.