In a recent interview with AARP, actress Jane Krakowski stated, “It is extremely hard to watch your loved one disappear from you while they’re still with you.” Many caregivers and family members of those living with dementia know that feeling well but may experience difficulty expressing it to others outside of their immediate circle or understanding the emotion themselves. Ambiguous loss, or the feeling that someone is physically but not psychologically present, is the term used to identify this feeling. Ambiguous loss is one of three forms of grief associated with those close to and caring for people with dementia.
Different types of dementia express cognitive, psychological, and emotional response losses in diverse ways. For example, those with frontal temporal dementia often display a complete lack of emotional response. They may appear cold, distant, and uncaring. Imagine expressing fear, frustration, or disappointment to your loved one only to be met with complete indifference to your feelings. In Alzheimer’s the loss is expressed more at the cognitive level. Spouses often remark about the difficulty in having an “adult” conversation or lacking a partner in the tasks of day to day living. Someone with Alzheimer’s who always took care of the finances or the household chores may lack the ability to execute those tasks any longer and their spouse is often left having to figure out how to take on these new responsibilities and the task of full-time caregiver. Lewy body dementia presents with wide fluctuations in cognition from moment to moment, often changing course mid-sentence. In one moment they make complete sense but suddenly they are nonsensical. Not knowing what is going to happen in any given moment can cause a great deal of uncertainty and spouses often report wondering if they are ever truly understood by their partner any longer. No matter the type of dementia, ambiguous loss is always a part of the journey and often not understood by close friends and family members.
Particularly in the early stages of dementia, a partner may appear “normal” to the outside world and even present well, masking their symptoms to doctors and mental health professionals. However, living with them and witnessing daily the changes in their behavior, spouses are often left feeling invalidated in their experience. This lack of validation from the outside world for a reality that exists leaves one wondering if their feelings are genuine and questioning the loss for themselves. This feeling is known as disenfranchised grief. Participation in a support group can often alleviate the feelings of disenfranchised grief by obtaining confirmation from others that their experience is valid and simply knowing they are not alone on their journey.
Many spouses and caregivers gather every bit of information they can on the dementia affecting their loved one. They want to know every aspect of the disease progression. How long will my partner continue to live with this disease? When will they lose functioning and in what areas? Will I be able to care for them at home or will I need to place them in a specialized memory care facility? Finding the answers to these questions present a dilemma. On the one hand they can prepare mentally for the losses that are to come, but on the other hand they may begin grieving the losses before they actually occur. This grieving process is known as anticipatory grief and can prevent enjoyment of experiences with the person who is still there.
Anyone who has experienced loss understands that grief is not linear and it is not uncommon to experience multiple types of grief at the same time. Finding support through groups, private counseling, mindfulness practice, or care management services are key to the self-care required to persist through the dementia journey.
Manteau-Rao, M. (2016). Being with grief. Caring for a loved one with dementia (pp. 36-39). Oakland, CA: New Harbinger Publications.