Supporting a Loved One Living with Dementia After Losing Their Partner

When a carer passes away, especially if they were a partner and primary support for someone living with dementia, the situation can be incredibly challenging. The individual living with dementia may struggle to understand the loss fully, and the way the news is communicated needs to be handled with care and sensitivity.

Below Izabela Klaczkiewicz, General Manager at Loveday Abbey Road, a care provider specialising in dementia, shares her tips on how to navigate this difficult time:

Understanding and Assessing Cognitive Abilities:

Understanding and cognitive abilities vary widely, so assessing the individual’s specific situation is essential. Consider their stage of dementia, their previous reactions to loss, and the emotional bond they shared with their partner. Individuals with early-stage dementia may be able to comprehend and process the concept of death better than those in later stages. Tailor your communication based on their understanding. Use simple and clear language, avoiding euphemisms and long sentences that might confuse them.

Grief is an expected outcome of loss and death, but cognitive impairment complicates this process as the person is unable to retain the information.

Prepare for Repeated Conversations:

People with dementia may not fully grasp the situation or may forget the information shortly after it’s shared. Be prepared to have multiple conversations about the death. Use a consistent explanation each time, keeping it simple and factual. Patience and compassion are key during these repeated interactions. If the person reacts intensely to this news each time and it affects their mood, behaviour and health over period of time, the approach may have to be re-considered.

Choose the Right Time and Setting:

Find a quiet and comfortable setting with minimal distractions to share the news. Pick a time of day when the person is most alert and receptive, as emotional distress can increase confusion and agitation.

Use Clear, Direct Language: 

When explaining the death, it’s best to be gentle yet straightforward. Avoid vague phrases like “passed away” or “gone to a better place,” which can be confusing. Instead, you might say something like, “Your partner has died. They were very sick, and their body stopped working.” Give them a chance to ask questions, but keep your answers brief and simple.

Acknowledge and Validate Emotions: 

People living with dementia might not express emotions in typical ways, but they can still feel sadness, loss or confusion. Allow them to grieve in their own way and offer comfort. Use phrases such as, “I know this is hard,” or “It’s okay to feel sad.” Be present, offer reassurance and respond to any emotional reactions with empathy.

Create a Sense of Continuity and Routine:

Maintaining a routine is essential, providing a sense of stability in the midst of a confusing and distressing time. Keep daily routines as consistent as possible to create a safe and predictable environment. Familiar activities and surroundings, mealtimes, meetings with friends and family can help soothe anxiety and disorientation and the continuity may help with not seeing the loved one eventually.

Incorporate Reminders or Mementos (if appropriate): 

If the individual often forgets that their partner has died, you might consider using visual reminders or mementos, like a photograph, a familiar piece of clothing or a memory box. These can serve as gentle cues about the person’s absence without needing repeated verbal reminders. However, this approach might not be suitable for everyone, so it’s important to assess if this would provide comfort or cause distress.

Focus on Positive Memories: 

For some individuals, talking about positive memories of the deceased partner can provide comfort and help them process the loss. Share simple, happy stories or look at pictures together if it seems to bring them some peace. However, if talking about the deceased increases agitation, it’s better to steer the conversation to other topics.

Seek Support from Professionals: 

Consider enlisting help from healthcare professionals, such as a dementia specialist, psychologist or social worker, who can provide guidance tailored to the specific needs of the individual living with dementia. Bereavement support groups, both in-person and online, can also offer advice and emotional support during this challenging time.

Engage in Calming and Reassuring Activities: 

Participating in soothing activities can help reduce anxiety and provide comfort. This could be something like listening to calming music, gentle walks, or engaging in a favourite pastime. Activities that evoke positive emotions can distract from distress and create a sense of wellbeing.

Consider a Gentle Explanation for Repetitive Questions:

If the person keeps asking about their partner’s whereabouts, and explaining the death leads to repeated distress, you might consider a gentle approach that reassures them without providing full details. For example, you might say, “They aren’t here right now, but you are safe, and we’re going to take good care of you.” Focus on reassurance and safety.

Take Care of Yourself: 

Supporting a loved one with dementia through grief is emotionally taxing. Ensure you have a support system for yourself, whether that’s through friends, family or professional counsellors. Self-care is crucial so you can remain patient, empathetic, and present for the individual living with dementia.