how to help someone with dementia experience loss

How to Help Someone with Dementia Experience Loss

February 18, 2019 Elaine C Pereira, MA

Experiencing the death of a friend or family member is a painful event that usually triggers a barrage of adverse emotions. Part of the multi-faceted grieving process is acknowledging who that person was, what they did, and how much they will be missed. Essentially, it’s remembering everything that defined them. 

However, when someone with dementia experiences the death of a person close to them, drawing on positive past memories is unpredictable. In addition, the inability to process new information is a hallmark of Alzheimer’s. An individual with dementia likely does not comprehend that someone they know is forever gone. They may struggle to recall specific details of that person, unveil past anecdotes and not actually process the meaning of a death.  

Strategies for delivering tragic news
Telling one person that another has passed away is an emotional undertaking. There’s an expectation that the recipient will tear up, cry out, express sadness, shock or condolences.  Delivering information to someone with dementia however may not illicit any of these responses. Be prepared. The more advanced their dementia, the less likely they’ll validate comprehending the message. 

  • Quiet Room. Pick a quiet, distraction-free room where the attention of the individual with dementia/Alzheimer’s isn’t further compromised by activities in the periphery, television, meals etc. 
  • Be clear. Sit near them; establish eye contact; cup their hand. Deliver the news clearly and simply and allow them time to absorb it. For example: “Mom, your sister Carol died this morning.”  
  • Details, Carefully. If the person with dementia responds appropriately or validates the news, consider providing snippets of additional details in small doses. “She probably died of a heart attack.”  
What happens next determines in part what you say and do next, but regardless keep your message clear and on point. Conversely if the individual does not respond verbally or does not appear to exhibit any non-verbal response either, gently repeat the original message. Pause. Add a few significant details.  

  • Delayed Response. The individual with dementia/Alzheimer’s may reference “Carol” at seemingly random times afterward, or possibly not at all. Everyone involved in their care should be on board with re-providing the information carefully and accurately.  
Strategies for managing the visitation   
Unless logistics such as distance or health status prevent attending a visitation or funeral service, consider having the person with dementia present. Again, be prepared with multiple contingency plans.   

  • Transportation. Consider important variables such as who will be transporting the person with dementia to any service related event. Depending on the specific individual, it might not matter, but give it some thought before a meltdown crisis occurs.   
  • Quiet Room. Plan ahead for a designated quiet/safe zone away from the throngs of people if necessary. Have snacks, drinks and their medications available and possibly a change of clothes too.  
  • Time. Limit the duration of the visitation. Some people with Alzheimer’s experience Sundowning Syndrome affecting the time of day and tolerance to post sunset/evening events.  
  • Grief Outbursts. The visitation and funeral service environment can trigger difficult memories from the past. Even the appearance and fragrance of funeral flowers can launch an avalanche of emotions. If the individual exhibits anxiety, overt crying, signs of being distraught, it’s very possible they are reliving emotional pain from past losses and/or blurring present and past events. Be cognizant of changes in facial expressions, mumbling, fidgety behaviors and other non-verbal signs of stress. A gentle exit may be prudent.  
Loss and grief fallout
Even a close family member may not detect any subtle indication from their loved one with dementia that he or she has absorbed the ramifications of losing someone they knew well. As processing new information is greatly diminished, delayed or even absent, it’s impossible to predict what remarks or behaviors may occur over time due to grief’s fallout. Again, be prepared to handle situations that appear “out of the blue” but reflect their reality at that moment.

Elaine C. Pereira, MA OTR/L CDP CDC is an author, speaker, certified dementia practitioner and caregiver. Contact her at elainep@iwillneverforgetbook.com.