November is National Family Caregiver Month

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Rosalynn Carter, former First Lady recently passed away under the care of hospice. Wife to the 39th President of the United States of America, Jimmy Carter, Rosalynn used her role as the First Lady to raise awareness in several areas. These areas included, but were not limited to, mental health, women’s issues, and children’s wellbeing. She also focused on caregiving, which is what I will highlight here. A powerful quote from Rosalynn echoes in my mind, especially during the month of November; “There are only four kinds of people in the world – those who have been caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers.” She was ahead of her time on the caregiver front. We have seen the impact that a caregiver has on a care recipient. Unfortunately, we have also noticed the toll caring for a loved one can take on caregivers. In November, we highlighted caregivers as part of National Family Caregivers Month. President Joseph Biden has proclaimed November as National Family Caregiver Month. Governor Timothy Walz has proclaimed Family, Friends, and Neighbors Caregiving Month for November. Going back to Rosalynn’s quote, where do you fit in?

Many people do not identify themselves as a caregiver. When our team gives presentations, we sometimes ask those in attendance if they are or have been a caregiver. Usually, only a small number of people raise their hands, but that is incorrect. Everyone, at one point in their life, has been a caregiver. Have you ever helped someone (family, friend, stranger) by holding the door open for them, picking up groceries or prescriptions, or simply making a phone call? That is caregiving!

Now that we have identified you as a caregiver, how do you care for yourself? What is your self-care routine? Are you feeling burned out and needing help? That is where we can help. MNRAAA has been collaborating closely with providers to expand services to assist caregivers. Many of these services include support groups, training sessions, and respite (both in-home and out-of-home services). If you are a caregiver, thank you. If you know a caregiver, thank them. I want to know what we can do to support you in this endeavor.

For additional information or to find local support groups, contact the Senior LinkAge Line at 1-800-333-2433 or online at https://www.sllreferral.org/. If you are interested in starting or getting additional information about supporting caregivers, please reach out to MNRAAA at www.mnraaa.org.

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How Alzheimer’s Disease Affects People

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There are over 100 types of dementia, even juvenile dementias. Alzheimer’s Disease is the most common type of dementia,1 accounting for about 60-70% of cases.2

Alzheimer’s is a progressive brain disease that causes problems with thinking and planning, memory loss, and behavior.3 At this time, there is no cure for Alzheimer’s.3 But, companies and researchers are working hard to discover effective treatment and prevention methods.

Experts are not entirely sure what causes Alzheimer’s4 which likely is one of the reasons developing treatments and prevention strategies is difficult. We do know that essentially every brain that has Alzheimer’s has beta-amyloid plaques and tau tangles.5 However, these plaques have been found in healthy brains too, so we know that it is not the definitive cause, but definitely a piece of the puzzle.

Alzheimer’s Disease impacts brain cells (called neurons). Plaque grows between brain cells, blocking them from communicating with each other. Tangles prevent the cells from obtaining necessary nutrients. Ultimately, brain tissue is lost and the brain shrinks.6

These changes to the brain affect various abilities and functions.

  • Usually Alzheimer’s attacks the hippocampus (responsible for short-term memory) first. This is why memory loss is a hallmark of Alzheimer’s.3 Memory loss, and possibly disorientation, are typically the first behavioral changes we notice.
  • The hypothalamus (responsible for hormone production) is often affected next. You may see changes in appetite, thirst, sex drive, and internal body temperature (for example, needing a sweater when you always used to run hot). Changes to sleep patterns are also common (e.g., waking up for the day at 2am).7
  • Alzheimer’s also attacks the emotion house of the brain, the amygdala. You may see mood swings or emotional reactions that are not usual for the person or not in proportion with what has occurred. You may see more anxiety, sadness, anger, and agitation. Paranoia is not uncommon (if I put my keys on the coffee table and move them, but don’t remember I moved them, then someone obviously stole them).7,8
  • The frontal lobe, responsible for higher-order thinking like planning, scheduling, decision-making, and judgment, is affected as well. This is also where our filter is stored, so we may say and do things we would never do if our brain was not under attack.7
  • The cerebellum, in charge of balance and coordination, is also impacted. It is common for people with Alzheimer’s to bump into things or fall.
  • If the occipital lobe is attacked, a person with Alzheimer’s may have trouble making sense of what they are seeing.7 Hallucinations (seeing something that is not actually there) or misperceptions (e.g., interpreting a spot on the rug as a hole in the ground) are examples.
  • After impacting these other areas of the brain, Alzheimer’s initiates more damage to the temporal lobe (where it started with the hippocampus). Long-term memory (memories of personal history, how to do things) and language are then affected (e.g., understanding what you are saying, expressing what they want to say, remembering what they were saying in the middle of their sentence).7,8

There are some abilities and areas of the brain that are not affected by Alzheimer’s (for example, the area of the brain responsible for derogatory language)! Coupled with the lack of a working filter, you may hear some language you never heard from the person with Alzheimer’s as this language is easily accessible.9 Enjoyment of music, rhythm, and non-verbal communication are also preserved and offer great opportunities for engaging and communicating with people with Alzheimer’s. Hugs, holding hands, eye contact, tone of voice, and body posture are all understood and continue to be ways to meaningfully connect. Incorporating non-verbal communication and music into your activities to optimize your engagement with the person with Alzheimer’s is useful, but also know that you don’t have to be a entertainer.10 Your presence alone is enjoyable and beneficial for your person with Alzheimer’s.11

 

This article is part of MNRAAA’s partnership with the University of Minnesota School of Public Health, discussing Alzheimer’s Disease, Brain Health, and accessing resources for prevention, education, and caregiver support. Guest authors Robyn Birkeland, PHD and Katie Louwagie, DNP, APRN, AGNP-C* are part of the Families and Long-Term Care Projects team at the University of Minnesota.

 

References

  1. Statistics about dementia. Dementia Statistics Hub. Accessed June 6, 2023. https://dementiastatistics.org/about-dementia/
  2. Subtypes of dementia. Dementia Statistics Hub. Accessed June 6, 2023. https://dementiastatistics.org/about-dementia/subtypes/
  3. What is Alzheimer’s? Alzheimer’s Disease and Dementia. Accessed June 6, 2023. https://alz.org/alzheimers-dementia/what-is-alzheimers
  4. What Causes Alzheimer’s Disease? National Institute on Aging. Accessed June 6, 2023. https://www.nia.nih.gov/health/what-causes-alzheimers-disease
  5. What Happens to the Brain in Alzheimer’s Disease? National Institute on Aging. Accessed June 6, 2023. https://www.nia.nih.gov/health/what-happens-brain-alzheimers-disease
  6. Video: How Alzheimer’s Changes the Brain. National Institute on Aging. Accessed June 6, 2023. https://www.nia.nih.gov/health/video-how-alzheimers-changes-brain
  7. Understanding parts of the brain | Alzheimer’s Society. Published March 18, 2021. Accessed June 6, 2023. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/parts-brain
  8. Alzheimer’s stages: How the disease progresses. Mayo Clinic. Accessed June 6, 2023. https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448
  9. Dementia, Swearing & Foul Language. Accessed June 6, 2023. https://www.dementiacarecentral.com/video/swearing/
  10. Art and Music. Alzheimer’s Disease and Dementia. Accessed June 6, 2023. https://alz.org/help-support/caregiving/daily-care/art-music
  11. Communication and Alzheimer’s. Alzheimer’s Disease and Dementia. Accessed June 6, 2023. https://alz.org/help-support/caregiving/daily-care/communications
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National Family Caregivers Month

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National Family Caregivers Month is celebrated every November and is a time to recognize and honor caregivers across the country. It is also a time to raise awareness of caregiving issues, educate communities, and increase support for caregivers. The 2021 theme is “Caregiving Around the Clock.”

It is important to remember the friends, loved ones and neighbors who help with grooming and bathing, clean houses and shop for older adults and others who need to be cared for.

Watching a parent age or seeing someone you care for change drastically due to illness can be devastating. If you are a caregiver, take time to check your wellbeing. If you are not sleeping well, exercising, or feel yourself becoming more isolated, talk to someone. There is no shame in feeling overwhelmed or in asking for help.

Some simple ideas that may be helpful include:

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Dementia Capability Training Moves Online

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On November 1 and 4, MNRAAA is hosting an online Dementia Capability training for 16 caregiver consultants in our 27-county service area. Caregiver consultants help caregivers develop strategies to achieve a balanced lifestyle that enhances their ability to provide good care and manage their well-being. This will be the first time this training is offered in a virtual format.

Dementia Capability training is part of the professional standards that caregiver consultants in Minnesota need to complete. Heidi Haley-Franklin delivers the training, MSW, LICSW, the Vice President of Programs at the MN ND chapter of the Alzheimer’s Association and Dr. Terry Barclay, the Director of the Neuropsychology Department at HealthPartners and Regions Hospital in St. Paul and Research Investigator with HealthPartners Center for Memory and Aging and the Institute for Medical Research.

The training will help participants recognize common dementia syndromes, learn to administer several cognitive screening tools, develop practical plans to support individuals with dementia and their families, and learn strategies for partnering with the medical community to provide good dementia care.

The topics covered in two half-day training sessions include Recent Alzheimer’s Research and Emerging Therapies, Identification of Dementia Subtypes, Appropriate Activities for Each Stage of the Disease, Communication and Behavior Management, Cognitive Screening Tools and Practice, Care Planning, Case Studies, and Navigating the Medical Community. MNRAAA is excited to pilot this training online.

Caregiver consultants are attending from the following organizations: A.C.E of Southwest MN, Adara Home Health, CCM Health, Granite Falls Living At Home Block Nurse Program, Grove City Area Care Living At Home Program, Interfaith Caregivers, Lutheran Social Service of Minnesota, Prairie Five Community Action Council, Inc, VINE Faith in Action, and Waseca Area Caregiver Services.

To find a caregiver consultant near you, call the Senior LinkAge Line at 800-333-2433.

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