Considerations for Caregivers

Considerations at End of Life:
Compassion Fatigue
Holding Space

Jan 21, 2023


Compassion Fatigue

In “What is compassion fatigue? Caregivers explain”, the author describes compassion fatigue as a condition that can occur when people, whose roles involve empathy and caring for others experience:

     > Exhaustion

     > Trauma,

     > Feel reduced boundaries due to constant demands 

Burnout is similar but more general and often linked to work dissatisfaction and chronic stress.  Compassion fatigue specific  to empathetic engagement with others’ circumstances. People in caregiving roles are  susceptible to both.

Symptoms can include:

Feeling helpless, reduced empathy, feeling overwhelmed, irritability, detachment, decreased pleasure in work, numbness, hopelessness, insomnia, anger, and isolation.

Alyssa Hui in “Research shows why it’s so important for caregivers to take a short-term break” explains that being a primary caregiver for a loved one with Alzheimer’s disease, dementia or other health conditions can be emotionally, physically and financially taxing, which can lead to caregiver fatigue or burnout.

A recent study in Nature highlights the importance of respite care for caregivers, which can be arranged for several days or weeks, to prevent:

     > Higher rates of social isolation,

     > Depression, 

     > Stress,

and improve overall health and well-being.

The study found that caregivers displayed higher rates of burnout when working with patients who displayed symptoms of agitation, such as:

     * Difficulty expressing needs verbally

     * Sleep disorders, like insomnia and wandering

Amy McGorry writes in “Caregiver fatigue in America rising at unprecedented rate” that caregiver fatigue has been on the rise since the COVID-19 pandemic.

Health experts suggest:

  1. Planning ahead 
  2. Building a community with other caregivers,
  3. Taking care of oneself, 
  4. Staying organized
  5. Asking for help
  6. Considering respite care
  7. Taking advantage of technology
  8. Consulting cultural organizations as ways to help manage caregiving.

A record 42 million Americans are caregivers for an aging parent, spouse, or individual struggling with daily activities, and the number is expected to grow as the population of Americans 65 and older is projected to grow by almost 50 percent between now and 2040.

Jo Gambosi writes about the experience of being a caregiver for their sister who has Parkinson’s disease and how it can lead to caregiver fatigue in Watching Out for the Effects of Caregiver Fatigue” .  

She recommends practices such as:

  • Prayer
  • Exercise like walking
  • Socializing with friends
  • Sharing emotional challenges with others
  • Anticipating their needs to decrease anxiety.
  • Self care like doing a joyful activity monthly

Holding Space 

Heather Plett in “What it means to “hold space” for people, plus eight tips on how to do it well” shares that Holding space” for someone means to walk alongside them on their journey:

     > Not judge or try to fix 

     > Offering unconditional support

     > Let go of control.

Palliative care nurse Ann demonstrated this concept to the author while her mother was dying.

The author now tries to:

     * Hold space for others 

     * Have others in life who will do same  for her.

Heather  emphasizes that holding space is not just for facilitators and coaches, but something anyone can do for others in their personal and professional lives.

In “What Does It Mean/Look Like to Hold Space for Someone?”, the author shares holding space means to put the needs and opinions of others before one’s own. . It is:

  • A skill that is not often taught or demonstrated in everyday life
  • Essential for healthy relationships, both personal and professional.
  •  Without it , relationships can become stunted & trust can be blocked
  •  Needed to foster  growth and evolution

Dr. Karen Wyatt in “Simple Ways to Comfort a Dying Loved One” gives specify advice on holding space with a dying loved ones. Her advice for families include:

  1. Create a quiet environment
  2. Sit in silence
  3. Speak soothing words
  4. Dim lighting
  5. Keep the patient’s mouth moist
  6. Play soft music if helpful
  7. Use gentle touch.

These simple actions can bring comfort to the dying person and provide an opportunity for the caregiver to offer love and support during this difficult time.

It is important to listen and observe carefully to recognize when something is causing discomfort or when there is a need for closeness, and to trust that you will instinctively know what to do when a need arises.

In summary and at risk of repeating some tips , I would like to share the succint thoughts of Dr. Judy Orloff in fHow to Hold Space for a Loved One. Holding space:

  • Involves radiating caring, nonjudgmental, and calm energy while being present for the person, without trying to fix them or absorb their distress.
  • A loving-kindness practice that is more about “being” than “doing”
  • Can be a powerful vehicle for deep healing.
  • Important to set the intention to hold a loving space for someone and to be completely present for them.
  • Empaths  benefit from visualization technique called shielding to hold off negative thoughts

Dementia Risk

MADELEINE HAASE wrote  in Prevention  about a recent study shows that socially isolated people may be at higher risk of dementia. The study followed 5,022 dementia-free U.S. adults who were 65 or older and found that social isolation was linked to an increased risk of developing dementia.

  • Socializing:
    • Requires many areas of the brain to be actively used and
    • Helps slow the progression of memory loss,
  • Important to note that personalizing social interactions may be beneficial  to fit situation

Victoria Stokes in “1 in 10 Older Americans Have Dementia: How to Reduce Your Risk” shares that  a  new study suggests that 10% of Americans ages 65 or older have dementia, and another 22% had mild cognitive impairment, a condition characterized by memory loss and confusion.

Certain factors can reduce the risk  such as:

  • Eating a healthy diet,
  • Staying active
  • Learning new skills

The study also found that dementia rates varied by race, ethnicity, education, and age, and that rates of dementia were shown to rise with age.

In “Aging with COVID-19: Post-Infection Risks for Dementia” , Christine Won explains  a new study by the University of Michigan.

It raises questions about the long-term effects of COVID-19 on dementia.

40% of the world’s population have been infected with SARS-CoV-2 as of November 2021.

  • In study, a  two-week immune challenge mimicking COVID-19-like inflammation in mice caused memory deficits that persisted for months
  • Looked specifically at role of inflammation in these memory impairments that exist long after recovery from illnesses.
  • Researchers suggest COVID-19 infections may lead to a surge in Alzheimer’s disease and other forms of dementia.

“Dementia Prevention: Reduce Your Risk, Starting Now” on Johns Hopkins Medicine website notes dementia is caused by various factors, with Alzheimer’s disease and vascular disease being the most common.

Vascular dementia results from plaque buildup and narrowing of the arteries that compromise blood flow to the brain. Many people have a mix of both types of dementia.

Improving blood vessel health can lower the risk of dementia by:

  • Controlling high blood pressure
  • Addressing diabetes
  • Quitting smoking
  • Achieving and maintaining a healthy weight
  • Getting more physical activity 
Photo by Yan Krukau on

Recreation and Aging

Research paper, “Recreational Activities for Senior Citizens” highlights   sports clubs and organized recreational activities has been linked to better mental health and resilience against stress.

Engaging in these activities can decrease symptoms of stress, depression, and anxiety.

Social interactions are important in  shaping behavior and there is a direct and indirect link between participation in group activities and mental health.

Recreational activities that can improve mental  and physical well-being: 

  1. Exercise programs
  2. Crafts
  3. Walking
  4. Bird watching
  5. Photography
  6. Gardening 

The authors of “Senior Exercise and Fitness Tips” share how exercise is important for older adults as it can help:

  • Boost energy
  • Maintain independence
  • Protect the heart
  • Manage symptoms of illness or pain
  • improve mental health by :
    • Improving sleep
    • Boosting mood, and self-confidence
  • Help prevent memory loss and cognitive decline.

Physical benefits include:

  1. Weight management
  2. Reducing the impact of illness and chronic disease
  3. Improving mobility, flexibility and balance.

It’s never too late to start exercising and reap the many physical and mental health benefits it offers.

Exercise can improve well-being in seniors with dementia. It can:

  • enhance sleep, strength, flexibility, and circulation, and
  • reduce fall risk, pain, and difficult behaviors such as agitation and sundowning.

To motivate seniors with dementia to exercise, it can be helpful to frame it as a regular everyday task or an exciting pastime event. Exercising with the senior and assisting when necessary can make it a more enjoyable and stress-free activity.

Also in “10 Ideas for Physical Activity & Exercise for Seniors with Dementia” , the authors highlight some great  physical activities for seniors with dementia including :

  1. Walking
  2. Sitting and standing exercise
  3. Simple stretching
  4. Chair stretche
  5. Gardening
  6. Household duties
  7. Tai Chi
  8. Exercise classes
  9. Water exercise
  10. Singing and dancing

We have discussed a number of physical activities. In “19 Exciting Activities for Senior Citizens“, Karen Frazier adds in  some additional  activities that seniors can participate in to challenge their minds and keep them sharp. Some ideas include:

  • Taking a class
  • geveloping a hobby
  • Reading and writing
  • Social activities like
    • Joining a book club
    • Participating in a senior center.

To enrich the spirit, seniors can also engage in activities like:

  1. Volunteering
  2. Traveling
  3. Spending time with friends and family

Additionally, seniors should also make sure to take time to relax and set their own schedule.


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