Working with FTD Caregivers: Ambiguous Loss and FTD

Worried mature couple holding hands while listening to female doctor.

Partners in FTD Care, Fall 2022
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by Mary O’Hara, LCSW

Pauline Boss, PhD, created the concept of ambiguous loss to explain a loss that lacks closure, clarity, and predictability. Ambiguous loss in FTD refers to the complicated experience of watching someone slowly lose their emotional and cognitive abilities while they remain physically present. This confusing experience complicates grief and can result in a caregiver’s feelings of hopelessness, anxiety, guilt, depression, and uncertainty. Ambiguous loss freezes the grieving process and can block the family caregiver’s ability to cope. If ambiguous loss isn’t acknowledged or tended to, it compounds a caregiver’s stress and may eventually affect their ability to provide effective FTD care.

Grieving and caregiving both take enormous energy. A family member caring for a person with FTD must do both. In death, loss is easily recognized; we allow people time and space to grieve, and offer our support as they try to gain a sense of closure. But in FTD, losses can begin long before death, and closure is therefore elusive. FTD caregivers are expected to tend to their loved ones while they are grieving; they do not have the time, permission, or opportunity to openly mourn. Understandably, FTD caregivers might not realize they are grieving, as they are forced to set those feelings aside to effectively perform the demanding tasks of daily care.

The emotional confusion caused by ambiguous loss can affect a caregiver’s sense of confidence and competence, impacting their ability to make decisions, follow through with tasks, and take steps that are in the best interest of their loved one’s health – or their own. This explains why family caregivers are sometimes unable to follow the recommendations of professionals. Know that caregivers are not intentionally ignoring your guidance; rather, simply getting through the day may be overwhelming for them.

While it can be frustrating when caregivers seem unable to take recommended actions to help their loved ones and themselves, it is important to recognize this as a normal part of their grief and to help them to name their experience. Educating families about ambiguous loss can help them understand what is happening and why they feel emotionally conflicted. Often, families are relieved to know there is a name for what they are experiencing. Getting them to understand how to build resilience can help them find ways to move forward and remain attentive to present needs and moments of joy.

Because of FTD’s specific symptoms and its progressive nature, grief accompanies ambiguous loss and contributes to a significant portion of caregiver stress. Caregivers who get support in naming, understanding, and tending to these feelings stand to benefit as they continue their journey.

Tasks to Help Build Resilience

Building resilience in the face of ambiguous loss can be helped by these six tasks:

  1. Adjusting Mastery: Recognize what we cannot control. Making a list of what you can and cannot control can be useful.
  2. Reconciling Identity: “Who am I now that this happened? What is lost? What remains?” — make a list of each. “Can I stop comparing myself to the person I used to be? Can I stop clinging to what should have been? How can I begin to feel good about who I am?”
  3. Recognizing and Normalizing Ambivalence: Talking about ambiguous loss helps us legitimize it, and allows others to recognize our grief. This task involves recognizing that seemingly opposite modes of feeling can co-exist: heartbreak and gratitude; a lack of closure (and its attendant anxiety) and the anticipation of moving forward with new relationships and interests; grief for a future that will never come and hope for a new beginning.
  4. Revising Attachments/Relationships: Building resilience requires building a community by forging new relationships with others who understand FTD. But it also requires reaching out to your existing community in an open way, by no longer hiding or downplaying the fact that FTD has become part of your life. Excessive avoidance limits our ability to find your way forward in a life changed by loss. By being more open and direct, we can change our relationship to FTD.
  5. Finding Meaning: Celebrate what remains. Creativity builds resilience. Opening yourself to new activities can prevent being locked into loss. Doing a values-focused exercise can help begin the search for meaning that is rooted in your values.
  6. Discovering New Hope: Try to find hope to be able to live with the loss and still have a good life. Is there any post-traumatic wisdom that you can take from this experience?

References and Recommended Reading:

Ambiguous Loss.

Boss, Pauline. Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss. 2006, New York: WW Norton & Company.

Boss, Pauline. Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief. 2011, San Francisco: Jossey-Bass.

Managing Ambiguous Loss and Grief.

See also:

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