Living with Alzheimer’s for Caregivers – Late Stage Program Recap

Alzheimer’s Disease is the most common form of dementia and can slowly strip away a person’s independence and place a significant strain on loved ones, especially those who are responsible for that person’s care.  Often the most difficult time is during the late stage of the disease, which can incapacitate a person, forcing them to rely on 24-hour care.  Nicolette Vasco, from the Alzheimer’s Association Greater New Jersey Chapter, shared some powerful information to help caregivers as they try to navigate the difficult course that is Alzheimer’s during the late stage.

Symptoms of late stage Alzheimer’s include:

  • an increase in memory impairment
  • experiencing the world through the senses
  • language becomes more basic
  • incontinence
  • increased dependence on caregivers
  • diminishing physical abilities

Care during the late stage should be all-encompassing and incorporate physical, emotional, and spiritual aspects of care.  This will often depend on the person’s individual needs as well as identifying the positive and negative triggers for that person.  Additionally, greater stress can be placed on the caregiver due to greater dependence or responsibility for making medical decisions so it is imperative that the caregiver makes time for his/herself to ensure that they remain healthy and able to give the best care possible.

Communication generally becomes more difficult, including more non-verbal cues such as facial expressions and body language.  It is important for caregivers to start to recognize these changes and be aware of how their non-verbal communications may be impacting their loved one.  For example, folding your arms may communicate that you are angry or upset with your loved one, even though that is not your intention.  Additionally, touching often becomes the most intimate way to communicate and can serve as a way to uplift the spirits of your loved one.  Meaningful activities like being outdoors or listening to their favorite music may be great ways to reach your loved one and demonstrate you care, even if you are unable to verbally communicate.

There are many other issues that caregivers will have to address during the late stage, including eating, moving, and using the bathroom.  Eating can become more difficult or the person may loose the ability to taste certain foods, making them less likely to eat.  It is recommended to work with a nutritionist to ensure your loved one is getting the proper nutrients in the forms that may be easiest to ingest.  Moving, including sitting and standing, may require more attention on the caregivers part to escort a loved one around, or they may need to start using a walker or wheelchair, significantly limiting their mobility.

There are many other medical symptoms that may become more pronounced during the late state, especially if someone is moving less.  Bed sores or pressure sores may start to develop because a person’s nerves are not communicating a need to change position or the person may be physically unable to move.  Additionally, the disease may start to cause hallucinations or delusions, requiring more monitoring by a caregiver.  As a result, it is important to consistently monitor the person’s care, especially as it relates to pain management, breathing, and changes in sleep patterns.

With all of the changes that may happen during the late stage, it may be necessary to shift the burden of care from a family member or friend to a professional, in the form of a home health aid or a 24/7 care facility.  If a move is necessary, it is important to involve other people close to the loved one to determine which option is best.  Visiting multiple facilities and dropping by for walk-in tours will help get a better understanding of the options that work best for your individual situation.  Additionally, decorating a room to make it seem more like home may help them adjust to their new environment quicker and with less anger or resentment.

For more information about Alzheimer’s Disease, including tips and resources, please visit www.alz.org or call their 24/7 Helpline at 1-800-272-3900.  You can find a copy of Part 1 of the presentation at https://www.njstatelib.org/assets/AlzheimersCaregiversLateStagePart1.pdf and Part 2 at https://www.njstatelib.org/wp-content/uploads/2019/04/Alzheimers-Caregivers-Late-Stage-Part-2.pdf.

About Andrew Dauphinee

Education and learning are passions of mine. Lifelong learning is a core part of who I am and I strive to pass that desire for information on to everyone I meet. As the Instruction and Outreach Librarian, it is my goal to provide quality, informative, and relevant programming to meet the diverse needs of our patrons. Please contact me regarding programming at adauphinee@njstatelib.org.