Dementia Caregivers and Compassion Fatigue

Younger woman holding older womans hands and smiling together

Written by Dr. Pat Zook

February 28, 2024

We’re usually into caregiving for our loved ones for a year or two before anyone actually calls it dementia and calls us “caregiver”.

And only then do we realize that what we have already been dealing with is caregiving. We can be caregivers for all kinds of medical, physical, or behavioral problems, but let’s consider the special case of dementia non-professional caregiving – particularly for a very close loved one like our spouse, life partner, or parent. You might be the only family person available or willing to take on this role, which can add significantly to the emotional and personal burden. Or maybe you have rallied your inner healer/caregiver to embrace this calling enthusiastically. Either way (or somewhere in between), this will likely eventually require many hours, days, and years of your time and energy. This can be very rewarding, even in your loved one’s final years, and provide you with ample compassion satisfaction to keep you powered up for each day. This satisfaction is stronger for caregivers who have learned how to take care of their own needs along the way, how to marshal and lead a team of helpers (including clinicians), and learn all that they need to know about dementia and what to expect throughout the whole journey. 

What is Compassion Fatigue?

However, even the best caregivers can get so caught up in the complexity, difficulties, and strain of continuous later-stage dementia caregiving that they forget to schedule rest times (professional or volunteer respite) and call on their helper team when they should. This, if it goes on long enough, can lead to compassion fatigue – the opposite of compassion satisfaction. Originally coined in 1992, this is a serious condition that goes well beyond just burnout.

It has been defined as “an extreme state of stress and tension that can lead to feelings of hopelessness, indifference, pessimism, and overall disinterest in other people’s problems”.

Lists of seemingly endless tasks lead to a diminished sense of self and loss of ability to empathize with their loved one. Compassion fatigue, though it builds up gradually, can burst out all at once, and usually does not happen early on, but even after months or years of stellar caregiving. So, it can have a relatively abrupt onset with uncharacteristic caregiver behavior that others and even the caregiver didn’t see coming. It is a biologic, physiologic, and social form of exhaustion and dysfunction. Although professional caregivers are not immune, family caregivers who are on duty 24 hours a day are more vulnerable to compassion fatigue – especially if they originally felt trapped into this duty by reluctant or indifferent other family members. Caregivers can be even more vulnerable when their loved one no longer interacts with them like their original self. Caregivers can appear to be indifferent to their loved one’s needs for help and interaction. This indifference is all the worse when caregivers have only the inevitable decline of their loved one to look forward to with little sense of hope for good days. 

Get Help from a Counselor, Friends & Family

Counselors can help caregivers either treat or coach to prevent compassion fatigue with a variety of mindfulness-based interventions. Faith-based and other support groups can help with experienced facilitators. Overcoming social isolation and loneliness that can result from years of dedicated caregiving would be a good starting point. Good friends and family can also step up to help restore the “care” in beloved caregivers. Because of its profound impact, the best “treatment” is actually preventing compassion fatigue before it sneaks into a caregiver’s daily routine. Caregiver Consulting, Dementia Informed Counseling, and support groups can help caregivers avoid dealing with regrets at the end of their caregiver journey.

Need Help Overcoming Compassion Fatigue?

Learn more about the ways D-CAN can help, and contact us with any questions or to schedule an appointment.