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The Why and How of Dementia Caregiver Support Groups

The Alzheimer’s Association has released new statistics for 2019 reporting that over 16 million Americans provide unpaid care to people living with Alzheimer’s disease and other dementias. These caregivers provide 18.5 billion hours of care valued at more than $234 billion.

According to the Family Caregiver Alliance website, these caregivers are providing complex care, such as:

  • Performing medical and nursing tasks
  • Providing help with activities of daily living (ADLs) such as personal hygiene, dressing and undressing, getting in and out of bed, or instrumental activities of daily living (IADLs) such as taking prescribed medications, shopping for groceries, transportation, or using technology, or both
  • Monitoring the care recipient’s condition and adjusting care
  • Communicating with healthcare professionals on behalf of the care recipient
  • Acting as an advocate for the care recipient with care providers, community services, or government agencies.

A 2015 statistic reports that 34% of caregivers were 65-plus years old and 47% of the care recipients were 75-plus years old. Older caregivers are more likely to be the spouse or partner of the person being cared for, and one-third of these caregivers reported being in fair to poor health themselves. Additionally, family caregivers of people with dementia report spending an average of nine hours per day providing help to their relative. Imagine having a job working nine hours a day, every day, with no set hours, just always on-call and available. It is no wonder that caregivers become exhausted and overwhelmed, at times feeling helpless, frustrated, angry, and irritable.

On average, caregivers providing care for a person with Alzheimer’s disease deliver care for one to four years longer than caregivers caring for someone with an illness other than Alzheimer’s disease. This is emotionally draining, physically exhausting care that most often will last five years or longer. It is imperative that caregivers focus on their own needs, take time for their own health, and get support and respite from caregiving regularly in order to sustain their well-being during this lengthy journey.

A provocative 60 Minutes report, which follows a couple over a 10-year period of the wife’s decline from Alzheimer’s disease, is clear evidence of the toll caring for a loved one with dementia takes on the caregiver (https://www.youtube.com/watch?v=luddi5OadYo). Yet, it is incredibly difficult for caregivers to undertake the advice to take care of themselves. It is just too much to imagine “taking care of” one more thing during the day, even if it is themselves.

However, it is to the caregiver’s advantage to follow the advice and seek support. Research has shown that caregivers experience lower stress and better health when they learn skills and receive support. Caregiver support groups can provide an opportunity for both. There are several reasons to seek the beneficial assistance of a support group:

  • Alleviate loneliness, isolation, and judgment
  • Reduce feelings of depression, anxiety, or distress
  • Gain a sense of empowerment and control
  • Receive advice or information about practical solutions or treatment options
  • Improve or learn healthy coping skills
  • Get a better understanding of what to expect in the future
  • Improve caregiving skills and give a better quality of life to their loved one
  • Learn about ways to keep their loved one at home longer
  • Reduce the time spent in search of caregiving advice and instead receive information from like-minded people on the front lines: other caregivers

Caregivers need emotional support throughout this arduous and often long dementia journey. During the early stage, a diagnosis of Alzheimer’s disease can be a heart-wrenching experience for both the person diagnosed and the caregiver. As the disease progresses, the person with Alzheimer’s no longer remembers having the disease, leaving the caregiver to carry the knowledge alone. The caregiver needs to establish a system of emotional support that will grow and change with them as their caregiving role and the emotional challenges change. They will continue to need emotional support as their feelings of isolation grows along with feelings of grief and loss. Depression is common in caregivers of people with Alzheimer’s disease.

There are a variety of support groups available to meet the varying needs of caregivers. For those unable to leave their loved one home alone, there are Alzheimer’s Cafés designed for them to attend together. These groups provide an opportunity for the caregiver to receive the support of other caregivers while their loved one participates nearby in a supervised activity or they may participate in an enjoyable activity as a group. Another way for caregivers to join a support group without leaving their loved one is online. There are many online support groups available that can be utilized at the caregiver’s convenience.

Ideally, it is beneficial if the caregiver can attend at least one support group unaccompanied by the person they are caring for. This affords them the opportunity to get away from their responsibilities for a while and do something just for themselves. They get a break, get to vent their frustrations, laugh, learn some new helpful techniques, and be reminded that they are not alone.

Support groups are attended by spouses, adult children, extended family members, as well as friends of the person with dementia. The only prerequisite is a desire to give and receive encouragement, understanding, and support from others who have similar concerns. Additionally, there are support groups that are specifically for those with young-onset Alzheimer’s disease, and other groups, Alzheimer’s Meet-Ups, especially for people who are early in the disease and their caregivers to do something fun in the community such as go to a museum or bowling.

Support groups can be found through hospitals, mental health programs, and support organizations such as the local Caregiver Resource Center or Alzheimer’s Association chapter. Listings for groups can also be found online or in local newspapers.

As Alzheimer’s disease progresses, caregivers find there are added demands on their time and everyday caregiving tasks become more complex. A support group can provide the caregiver with information, inspiration, and encouragement. It is a safe and confidential place to discuss problems, frustrations, and share positive experiences as well. The understanding of those who know firsthand what you are going through is priceless.

 


For more information visit:

The Family Caregiver Alliance: https://www.caregiver.org/about-fca

The Alzheimer’s Association: https://www.alz.org/help-support/community/support-groups

Dementia Care Central: https://www.dementiacarecentral.com/caregiverinfo/careforcaregivers/support/