Understanding ambiguous loss and dementia

Susan Fisher and Tammy Adams SPECIAL TO THE STANDARD

Caring for a loved one with dementia can be a challenging and emotionally draining experience. Watching someone you care about slowly lose their memories, personality, and independence can be heartbreaking.

One emotional aspect many caregivers experience, especially family members, is "ambiguous loss." This type of loss is characterized by the absence of closure, and the inability to define or understand the loss fully. In the case of dementia, it often manifests as grieving the loss of the person's cognitive abilities and the profound changes in their personality.

Ambiguous loss is different from traditional loss, where there is a clear event or finality, such as death or divorce. In the case of dementia, a loved one may physically be present, but their cognitive abilities and personality traits slowly fade away. This fluctuation between remembering and forgetting can create confusion and mixed emotions for caregivers. It is like losing someone a little bit every day, with no end in sight.

One of the biggest challenges of ambiguous loss is the lack of closure. There is no definitive loss to mourn, and this can make it difficult for family member caregivers to process their emotions. It is common for caregivers to experience a sense of grief, sadness, and longing for the person their loved one used to be. They may feel guilty for wishing their loved one's suffering would come to an end, at the same time, they continue to care for them with love and compassion.

The emotional toll of caring for a loved one with dementia extends beyond the ambiguous loss itself. It can also lead to feelings of guilt, anger, exhaustion, and frustration. Caregivers may feel guilty for their own self-care needs or for not being able to provide the care they think their loved one deserves. They may become frustrated with the constant repetition, confusion, and unpredictable behaviours which come with dementia. Caregivers need to recognize and address these emotions, seeking support from friends, support groups, or therapy to navigate the complexities of caregiving.

So how can caregivers cope with the ambiguous loss of their loved one's cognitive abilities?

Firstly, it is crucial to acknowledge and validate their feelings. Accepting it is natural to grieve and mourn the changes in their loved one's condition allows caregivers to process their emotions effectively, cleanly. This can involve seeking professional support from therapists with experience in dementia care or joining support groups where they can connect with others going through similar experiences.

Another important step is, finding ways to create meaningful connections with the person living with dementia. While their cognitive abilities may be declining, finding activities which bring joy, comfort, and a sense of purpose to both the caregiver and their loved one can help. Engaging in activities the person with dementia used to enjoy, such as listening to music, looking at old photo albums, or taking gentle walks, can help create moments of connection and preserve a sense of identity for both of you.

In addition to emotional support and meaningful activities, caregivers must prioritize self-care. Caring for a loved one with dementia is a demanding task which requires physical, mental, and emotional strength. It is essential for caregivers to take breaks, ask for help from other family members or friends, or hire companies to come into the home, so caregivers can have a few hours of respite, and engage in activities which bring them joy and relaxation. Taking care of themselves allows them to be better equipped to care for their loved ones effectively.

Finally, it is important for caregivers to educate themselves about dementia and its progression. Understanding the disease and its effects can help caregivers navigate the challenges more compassionately and with greater awareness. This knowledge can also help manage expectations, as caregivers learn to accept their loved one's condition will likely continue to change and decline.