Ambiguous Loss and Alzheimer’s Disease

There are more than 5 million adults in the United States living with Alzheimer's disease. Alongside them are 15 million family members and friends helping them as caretakers.¹

Caregiving may be rewarding, but it also may come with stresses and challenges. Many caregivers say it is not Alzheimer's disease that causes stress. Instead, it is how much uncertainty comes with taking care of someone living with the condition.²

Here and not here

When a loved one is living with Alzheimer's disease, it may feel as though they are both here and not here. It is common for a person with Alzheimer's memory and awareness to change every day or even multiple times per day. These changes may not be consistent. It may feel as though the person is improving one minute and declining the next. Some caregivers say they feel as though they are living with a stranger.²

Dr. Pauline Boss is an author and psychologist who has studied loss. She has worked with many families who have lived through an Alzheimer's diagnosis. From this research, she created the Theory of Ambiguous Loss.³

What is ambiguous loss?

Ambiguous loss is different than other kinds of loss because it is less clear. It is not predictable, and it is often difficult to find closure. Ambiguous loss can happen in many scenarios, such as a miscarriage or Alzheimer's. The experience is slightly different in each. In Alzheimer's and other kinds of dementia, the person is still there with their loved ones, but they are changed by the progression of their disease. They are still living but may not feel like the same person.³

Dealing with disease progression

Caregivers experience many small and large losses related to their loved one's memory loss. These range from a loved one no longer being able to drive to them no longer recognizing their own family. Family members may also feel the loss of a future they imagined. These losses can build up. Many people do not know how to cope with this kind of loss.²

This can be distressing to loved ones and can cause tension. This tension makes it difficult for caretakers to tend to their loved ones or even to themselves. Ongoing ambiguous loss can strain relationships. This can lead to more issues, such as burnout or loneliness.³

What can I do to cope with ambiguous loss and Alzheimer's?

The Family Caregiver Alliance (FCA) created a fact sheet to discuss ambiguous loss. It includes 9 tips to understand and help cope with the complex feelings of ambiguous loss. Here are a few of them:²

Naming your experience can help you recognize and work through your feelings. Using the term "ambiguous loss" can help with this. It can also help explain your feelings to other family members.

Know your support system. It is important to have loved ones around to lean on. If there are multiple caregivers in your family, it may help to sit down and talk together. You can discuss your needs and how to divide up your time so everyone can be involved while still having time off.

Look toward new dreams of the future. This may sound contradictory. However, it helps to talk to family and friends about positive events in your life that are coming up. It also may help to plan for new vacations and hobbies to keep balance in your life.

Take care of your own health. It is easy to become absorbed in the caretaker role and put your own needs aside. However, your health is just as important as everyone else's health. This relates to both physical and mental health.

Things to consider

If you are struggling with ambiguous loss, there are many resources to turn to. The FCA website provides a variety of information about ambiguous loss, coping methods, and support services.

You may also find it helpful to speak to your loved one's doctor or palliative care team. They can help you find more resources for your loved one and respite care for you. They may also be able to connect you with support groups. It is important to remember that help is available, and you are not alone on your caregiving journey.