Tag Archives: Mental Health

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.

From Dorothea Dix to the Post-War Era: Historic Reports of New Jersey’s Psychiatric Hospitals

New Jersey opened its first state hospital for those needing psychiatric care in 1848.  Known as the New Jersey State Lunatic Asylum, this hospital was established in direct response to Dorothea Dix’s patient advocacy campaign and, as such, offered a revolutionary approach to patient care, one that emphasized holistic treatments and protected patient dignity.  Yet over the next century, these approaches would be challenged by changing social, political, and scientific norms.  The New Jersey State Library’s recently digitized collection of New Jersey State Asylum annual reports offers a glimpse into patient life and care over the course of that century. Please join us as Caitlyn Cook, our Digital Librarian, discusses the collection, the stories found within, and their relevance today.

Caitlyn Cook is the New Jersey Reference and Digital Librarian for the New Jersey State Library in Trenton. Her work includes digitizing historic, New Jersey government documents to ensure long-term preservation and to promote public access.


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Effective Communication Strategies for Alzheimer’s Caregivers Program Recap

Thank you to Nicolette Vasco from the Alzheimer’s Association for her talk Effective Communication Strategies for Alzheimer’s Caregivers.  Alzheimer’s is a very complex disease, affecting each person, and those close to them, differently.  People with Alzheimer’s will rely more and more on their caregivers as the disease progress and it is important for caregivers to be able to communicate, whether verbally, physically, visually, in order to help their loved one, even in the most mundane of tasks.  The following information is broken down into the 3 stages of Alzheimer’s (early, middle, and late):

  • Communication in the Early Stage
    • Changes that may occur
      • difficulty finding the right words or taking longer to speak or respond
      • struggling withing decision-making or problem-solving
    • How to connect
      • Ask directly with how to help with communication
      • keep sentences clear and straightforward
      • Leave plenty of time for conversations and include the person in conversations that affect him or her
    • Things to keep in mind
      • avoid making assumptions about the person
      • communicate in the most comfortable way for the person (phone, in-person, text-based such as email)
      • Be honest, stay connected, and laugh with each other
  • Communication in the Middle Stage
    • Changes that may occur
      • using familiar words repeatedly
      • inventing new words (hand clock instead of watch)
      • easily losing train of thought
      • communicating through behaviors more often than words
    • How to connect
      • Approach
        • approach the person gently, from the front, and use names to identify you and the person
        • maintain eye contact and remain at eye-level
        • avoid criticizing, scolding, and arguing
        • Take your time
      • Join the person’s reality
        • assess their needs
        • confirm you understand their concerns
        • provide a brief answer
        • respond to the emotions behind the statement (they may be angry because they are really afraid of being alone)
      • Keep it slow and basic
        • use short sentences and basic words
        • speak slowly and clearly
        • make sure only one person is speaking
        • limit distractions such as television noise
        • be patient
      • Give multiple cues
        • provide visual cues and gestures, but avoid sudden movement
        • write things down
        • put answers into your questions
        • turn negatives into positives
        • avoid quizzing
  • Communication in the  Late Stage
    • Changes that may occur
      • communication is reduced to a few words or sounds
      • similar responses to familiar words or phrases
    • How to connect
      • listen for expressions of pain and respond promptly
      • help the person feel safe and happy
      • bring respect to each conversation and keep talking to them
      • communicate using all 5 senses
        • touch
          • feel different fabrics
          • give lotion hand massages
          • visit with animals
          • hands-based arts and crafts such as sculpting
          • hold the person’s hand or stroke their arm or back
          • brush their hair
        • sight
          • watch videos of favorite subjects
          • view photos that resonate with the person
          • sit outdoors or go somewhere such as an aquarium
          • paint with watercolors
        • sound
          • listen to familiar music or recordings of nature
          • listen to songs or speech in their native language
          • read them books or the newspaper
          • your voice may be soothing and comforting to them even if they cannot remember you all the time
        • smell
          • herbs or spices
          • cotton balls dipped in essential oils
          • cut fresh flowers
          • fragrant hand lotions
          • cook and feed them foods that smell good
        • taste
          • cook favorite foods, which may encourage them to eat more
          • home-baked goods
          • flavored drinks to ensure they are staying hydrated

You can download of copy of the presentation at https://www.njstatelib.org/wp-content/uploads/2019/01/Effective-Communication-Strategies-Presentation.pdf.  Please visit the Alzheimer’s Association for more information on all aspects of the disease.  If you need immediate help, please contact their support line 24/7 at 1-800-272-3900.