Living with Dementia: Caregiver Grief and Loss

caregiver grief and loss

Living with Dementia: Caregiver Grief and Loss

From the time a person is diagnosed with dementia, their loved ones are thrust into an unknown and uncertain space where they are no longer sure what the future holds. This uncertainty creates a unique type of loss, known as ambiguous loss. Ambiguous loss is difficult for caregivers to cope with because there is no defined way to mourn the loss of a loved one who is still alive.  


Dementia is a progressive disease that causes significant changes in the brain, which can lead to impaired thinking, memory, and communication abilities. As the disease progresses, the person with dementia may become increasingly agitated, confused, and withdrawn. They may also lose the ability to do things they used to enjoy as well as activities of daily living, such as bathing or dressing themselves.  As the disease progresses, therefore, the person becomes more and more dependent on others for care.  The role of a caregiver for a loved one with dementia can be incredibly rewarding, but it can also be incredibly challenging.  This can be extremely difficult for caregivers, who often feel overwhelmed and helpless. 

Caregiver Stress and Heartache

The role of a caregiver is one that is often full of stress and heartache. Caring for a loved one with dementia can be an incredibly difficult, heartbreaking experience. In addition to the many responsibilities involved in caring for a loved one who becomes more dependent overtime as the disease progresses, caregivers also often experience grief and loss when dealing with the condition of their loved one.

Caregivers often feel a range of emotions when caring for a loved one with dementia. These can include sadness, anger, frustration, guilt, anxiety, and loneliness. It is not uncommon for caregivers to experience grief and loss as they witness changes in their loved one’s abilities.  Their condition continually changes and they are no longer the same person we knew and loved and that realization can be painful to experience and share with others.

How to Manage Your Emotions

It can be hard to cope with these feelings on your own, but it is important to remember that you are not alone. There are many resources available to help you manage your grief and loss.

  1. The first step in coping with grief is acknowledging your feelings.  Grief can be paralyzing and overwhelming, and it often leads to feelings of sadness, anger, confusion, and isolation. Don’t try to bottle up your grief or ignore it – it will only make it harder to deal with in the long run. Instead, allow yourself to feel your emotions, even if they are painful.  
  2. Seek support from friends and family members. Talk to the people who care about you about how you are feeling. They may be able to provide support and understanding.
  3. Attend to your vulnerability factors.  While it can seem like there are so many demands stretching you in all types of directions, it is important to prioritize your own needs.  Remember that you cannot fill others up with an empty cup yourself.  Remind yourself that sleep, exercise, and healthy and nutritious meals are necessary and non-negotiable with your caregiving responsibilities.  
  4. Find ways to enjoy yourself and set boundaries for your time separate from your loved one and the responsibilities that come with caregiving.
  5. Join a caregiver support group virtually or in-person.  It can be helpful to talk with others who may have similar emotions and thoughts to your own.  It can feel isolating to experience the daily routines and tasks, and it benefits us to hear others who can relate and with whom we can relate to.

If you are struggling with the feelings mentioned above and believe that you could benefit from additional support, consider the benefits of therapy and speaking to a licensed professional who can provide warm and non-judgmental support during this difficult time.

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