Dementia Family Caregiver’s Burnout Prevention

Dr. Éthelle G. Lord is the President of the International Caregivers Association www.ICareAssoc.com and author of ALZHEIMER’S COACHING: CREATING AN ALZHEIMER’S-FRIENDLY HEALTHCARE WORKFORCE.

Research has shown that burnout in caregiving is a reality, especially with informal (family) caregivers. Few informal caregivers have the constitution to do well for long periods of time while providing day-to-day caregiving. Most informal caregivers will not be able to withstand such a demanding task and therefore are facing burnout.

Burnout is a state of physical, emotional and mental exhaustion often accompanied by a change in attitude, depression and neglect, and may lead to a feeling of hopelessness that can, in some cases, result in homicidal/suicidal tendencies.

Because someone living with dementia may live for decades, being aware of the important signs of burnout is extremely valuable and critical for everyone. To paraphrase a popular quote on depression….

Burnout “is not a sign of weakness. It’s a sign that you have been strong for too long”.

There is a common challenge that people share, when providing care for people living with dementia, a long-term and degenerative disease. Because of its long-term nature, these informal caregivers are at high risk of burnout.

It is important to recognize the symptoms of burnout and to seek professional help when you need it. The caregiver fatigue timeline below reflects the results of numerous health and wellness research studies on full-time caregiving such as found in informal caregivers for their love one who is living with dementia or Alzheimer’s. People living with Alzheimer’s may require years, even decades, of specialized care by family members. Knowledge of the signs of caregiver fatigue is a common-sense thing to look out for by family members and doctors.

Caregiver Fatigue Timeline

1-18 Months (after the diagnosis of dementia)

Caregiver finds themselves:
  • anxious to provide the best possible care for loved one
  • managing the person with dementia
  • taking on responsibility for maintaining the house, garden, car
  • attending to family relations
  • “keeping up appearances”
  • helping person with dementia through social situations
  • remaining optimistic, caring, supportive
  • operating as “superwoman/superman”
  • attending to personal care

At 21 Months

Caregiver may begin to show signs like those below that suggest they are becoming more and more fatigued:
  • begin to take medication, usually for sleep/headaches
  • find it harder and harder to keep on top of things
  • Find some help from family members who may still available

24-32 Months

Caregiver’s fatigue had grown to where:
  • emotional and physical resources are clearly drained
  •  contact with their own personal doctor, dentist, faith support, friends is less and less
  • Caregiver burnout may express itself as
  • experiencing feelings of powerlessness
  • realizing that their caregiving now consumes their whole day and night
  • outside help dwindles away
Caregiver burnout may express itself as:
  • experiencing feelings of powerlessness
  • realizing that their caregiving now consumes their whole day and night
  • outside help dwindles away

At 32 Months

Caregiver may find that:
  • their stress becomes harder to conceal
  • they may begin taking tranquilizers to cope with fatigue
  • they may begin using medication for musculoskeletal pain
  • sleep is continually disturbed
  • they are gradually becoming more and more irritable o they have less and less contact with others

By 38 Months

Caregiver:
  • feels unhealthy
  • finds it hard to get up
  • never feels rested
  • may have hypertension/colitis
  • may exhibit symptoms of chronic fatigue
  • caregiver loses the will to take care of themselves
  • is unable to manage the household
  • rarely socializes with others
  • feels helpless, guilty, a failure

After 50 Months

Caregiver may experience:
  • a chronic state of fatigue
  • a state of “unwellness”
  • an inability to ask for help
  • feelings of isolation
  • inability to access resources for information or help

Source: www.snocare.org

If you or someone in your family is an informal (family) caregiver, please share this list with your family and your doctor. Your doctor will be able to monitor your health along with the health of the person you provide care to.

 

Author

Éthelle G. Lord

Contributor, Heruka Lifescience & Health Innovations


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