Authors

  1. Marshall, Katherine DNP, NP, PMHCNS-BC, CNE
  2. Hale, Deborah MSN, RN, ACNS-BC

Article Content

Families often have questions and concerns about how to approach a family member with dementia when a loved one dies. How and when should this news be delivered? How much detail should be shared? Should the person with dementia attend the funeral services? Despite the frequency with which these discussions occur, there is little-to-no evidence-based literature to guide decisions.

 

There is no right or wrong way to approach the discussion, but keep in mind that the "best" approach often depends on several factors and will vary from day to day. How an individual with dementia responds to a loss may depend on the stage of dementia, their relationship to the person who died, how often they were in contact with the person, and the way they grieved losses in the past. Individuals without dementia accept the reality of the loss and learn to live each day without that loved one. Individuals with dementia have little ability to do this and often manifest their grief through restlessness and agitation. They have a sense that something is not right and struggle with memories of this individual. They may repeatedly ask about where the loved one is and how they are doing. Constantly reminding them of the death is often not helpful.

 

Fortunately, the Alzheimer's Society has some basic guidelines to help families if they decide to tell their loved one of a death:

 

* Tell the news as soon as possible. They will sense that something is wrong and need information to help them understand, even if only for the immediate period.

 

* If you are too emotional to talk to them, find someone else who can-a friend, healthcare professional, or clergy.

 

* Choose a time to tell them when they are well rested and can focus on the news.

 

* Avoid the details and use short simple sentences.

 

* Use clear words like "died" instead of "passed away" or "at peace now" to avoid increasing confusion.

 

* Avoid being dishonest about the loss, which may result in worry and agitation later when they realize the person is not available for their normal routine.

 

* Provide physical support by touching, hugging, or holding their hand.

 

* Involvement in funeral planning and attending a funeral should depend on the individual's ability to process the death and how they respond.

 

* If the loved one with dementia attends the funeral, they should be assigned a one-on-one caregiver to support them or remove them from the environment if necessary. The loved one need not attend full services and may have needs met with a short private prayer service where they can avoid the stimulation of a large gathering.

 

 

Helping a person with dementia cope and process grief can best be facilitated by reminiscing and recalling fond memories or positive experiences of the deceased. Encourage the individual with dementia to join you and remember the events. Bring photos or favorite objects of the deceased to facilitate the reminiscences. When the loved one constantly asks about the deceased, try to respond to the feelings (sadness, longing, fear, distress, confusion, anger) by offering reassurance and support. For example, "I know you really miss dad most in the evening so I will sit with you tonight." Don't bring up the death if they have not mentioned it and are not distressed as reintroducing the reality will cause them more acute grief. When the individual with dementia is not dealing with grief effectively it is often helpful to use redirection or distraction (Alzheimer's Society United Against Dementia, 2021).

 

Grieving is a complex process. Each family must find the most appropriate strategies to help their loved one understand and cope with the loss. It is important for family members to be consistent in their approach. It is often helpful to have a plan detailing who will talk with the loved one and how the topic will be approached when death is imminent.

 

Individuals in earlier or middle stages of dementia may have more difficulty with the loss and may react intensely to the information, affecting their mood, behavior, and health. When this is the case, it is often wise to reconsider the approach and whether it even benefits the loved one to be made aware of the death. Individuals with advanced short-term memory loss will continually relive the information and distress as if it is the first time they learned of the loss. It may be necessary to refrain from sharing a death with an individual with dementia to achieve a comfortable and tolerable equilibrium for the individual. Individuals in advanced stages will often be comfortable with a simple explanation that their loved one is running errands or out to an appointment. They quickly forget that the loved one is missing thus avoiding considerable distress. Usually after some time they stop asking where the individual is as the deceased's absence has become the new normal in their daily routine.

 

Interferon does not improve outcomes for hospitalized adults with COVID-19

NIH: A clinical trial has found that treatment with interferon beta-1a plus the antiviral remdesivir was not superior to treatment with remdesivir alone in hospitalized adults with COVID-19 pneumonia. In a subgroup of patients who required high-flow oxygen, investigators found interferon beta-1a was associated with more adverse events and worse outcomes. The study, called the Adaptive COVID-19 Treatment Trial 3 (ACTT-3), took place from August 5, 2020 to December 21, 2020. The study team enrolled 969 adults at 63 sites in the United States, Japan, Mexico, Singapore and South Korea. Participants were assigned at random in a 1-to-1 ratio to receive either interferon beta-1a plus remdesivir or a placebo plus remdesivir. In September, 2020, the study was modified to stop enrolling participants with severe COVID-19 who required high-flow oxygen and to exclude people who required non-invasive or invasive mechanical ventilation. These changes were made after the study's Data and Safety Monitoring Board noted a greater rate of severe adverse events, particularly worsening of respiratory status, among participants requiring high-flow oxygen at enrollment who received interferon beta-1a compared to those who did not receive interferon beta-1a. The ACTT-3 investigators speculate that interferon may have increased the inflammatory response, leading to more severe respiratory disease in these participants.

 

REFERENCE

 

Alzheimer's Society United Against Dementia. (2021). Supporting a person with dementia during bereavement. In Alzheimer's Society United Against Dementia. https://www.alzheimers.org.uk/get-support/help-dementia-care/supporting-person-d[Context Link]