Category Archives: Senior Care Professionals

Dementia and a New Normal Holiday Celebration

The holiday season can be overwhelming for people with dementia. Create a new normal holiday celebration so that everyone is merry and bright!

I visited a friend this week who lives in a wonderful memory support community. I arrived with a flurry- two Christmas packages in one hand, my dog on a leash in the other,  and my work bag flung over my shoulder. My friend was waiting near the front door.  As the other residents caught a glimpse of my dog, they rushed to extend their greetings. Consequently, I almost dropped the packages, my dog startled, and the commotion created an overwhelming and confusing scene, even for me.

My arrival caused my friend to become anxious. He was ready to flee and needed to separate himself from the chaos.  He wasn’t sure where to go, so we just started walking down the hallway. Eventually, we came upon a place to sit, and he told me that he was sorry, and he only had about 15 minutes until his next appointment.

He sent a loud and clear message that it was all too much. I tried to create a festive holiday experience for my friend, and I over-did it. Not to mention, I know better.

A New Normal Holiday Experience

This experience tied so perfectly into the message at church today. The holidays can make you want to look back, reminisce, and wish for the days of yore. Our hearts tug to reach back and relive the past. And, we want those we love with us, just as they were in the past. Unfortunately, life’s changes often make that impossible.

Reminiscing is normal and therapeutic. However, living in the past is unhealthy. The holidays should inspire hope and joy.  Acceptance can be difficult, but it is our best bet for having an enjoyable holiday experience.

In Kathy Dreyer’s November article, she referenced helpful holiday tips for caregivers.  In the same way, I want to offer suggestions from the perspective of a person with dementia.

Please accept that:

  • I may not be able to handle large group events
  • I might feel blue
  • activities of the past (such as cookie-baking) may be beyond my capability
  • I may not feel comfortable being away from my familiar environment for an extended period
  • I need a new normal to celebrate the holidays

In conclusion, holiday overload can be distressing for people living with dementia. Peace and blessings to all who strive to incorporate a new normal holiday.

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a Certified Master Trainer with the AGE-u-cate Training Institute. Through her company Enlighten Eldercare,  Julie provides training and educational programs on elder caregiving for family and professional caregivers.  In addition, she is an instructor and the Interim Director of Gerontology at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

Stigma and Alzheimer’s Disease: Support and Understanding

The stigma associated with having Alzheimer’s disease and/or any other type of dementia can create a profoundly isolating, painful experience. As a person starts to go through some of the early symptoms, such as memory loss, difficulty in completing everyday tasks, and not being able to follow conversations, that person may be reluctant to share these symptoms with family, friends, or a doctor out of fear of knowing what might come next. Part of that fear can be tied to the stigma that has accompanied Alzheimer’s disease and other dementias.

According to the World Alzheimer’s Report for 2019, stigma takes many forms. It can occur when a person with dementia is no longer accepted by friends due to misconceptions about Alzheimer’s disease. Without a realistic understanding about the effects of Alzheimer’s disease, people may misinterpret behaviors, thinking that someone with Alzheimer’s disease is doing something (e.g., wandering, being paranoid) on purpose. Also, there can be misinterpretation over the abilities of a person with a diagnosis, thinking that the person can no longer make any decisions and does not want to be involved in the care planning. These misconceptions can result in leaving that person out of the conversation and create a worse environment.

Despite the lingering effects of stigma of having Alzheimer’s disease or other dementias, there are many efforts underway to alleviate the stigma and replace it with understanding and much-needed support. There are Dementia Friendly communities in more than half of the United States currently as a part of the Dementia Friendly America network . Dementia Friendly communities are created to support individuals living with dementia and those caring for them. The communities create sector-wide networks to keep persons with dementia engaged and connected.

The Alzheimer’s Association also serves to educate the community and support persons living with Alzheimer’s disease and their caregivers. Through statewide chapters and the national office, there is more information about the disease, as well as ways to cope and find support for dealing with stigma.

The Centers for Disease Control’s (CDC) National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) provides information and support to promote health of older adults. The CDC also provides recommendations for addressing stigma associated with Alzheimer’s Disease and other dementias. Some of their recommendations include encouraging persons with dementia and their family members to discuss any concerns with their health care provider, promote engagement of persons with dementia in senior centers and adult day care programs, and support opportunities to help the general public’s understanding about Alzheimer’s disease through education and information in public settings. A good approach is to keep positive and provide information. The important thing is to meet people where they are, those with dementia and/or Alzheimer’s disease, as well as those who need more information, and offer support for both.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

Use of Anti-Psychotic Medications: Signs and Symptoms to Watch

Imagine that you are in pain and struggling to determine where the pain is coming from. You can’t find the words to express yourself, so you use the only words you have, but no one seems to understand or help. Imagine being in pain for over an hour, and now someone is asking you to do something you prefer not to do. They are asking nicely, and attempting to move you, but you are hurting and do not want to be moved. You want help and relief from your pain, but the person is not helping, and you feel desperate for someone to understand. What might you do to be heard and understood? You might lash out by screaming, hitting, or biting, depending on how much you are hurting and how much the other person is forcing you to move. What might happen next? If the scenario above took place in a long-term care community, it is probable that anti-psychotic medications would be used to calm or sedate you.

Anti-psychotic medications have been given to calm persons with dementia living in a long-term care community, even though those antipsychotics are not intended to be used for that purpose. Off-label use of anti-psychotic medications can have serious and potentially deadly consequences for anyone taking that kind of medication outside the scope of intended use. For older adults, especially those with dementia, that off-label use can be deadly. According to the National Consumer Voice for Quality Long Term Care“, these kinds of medications, when used for other than their intended purpose, can greatly increase the risk of having a stroke, heart attack, diabetes, Parkinsonism, and falls among persons with dementia. Also, if long-term use of these medications in the long-term care setting is detected, it is likely that they are being used as a chemical restraint instead of managing behaviors, neither of which is acceptable. And yet, it happens.

So, how can you tell if someone is being treated with anti-psychotic medications for behavioral expressions? The National Consumer Voice for Quality Long Term Care provides some guidance. If your loved one is suddenly submissive, is not sleeping, or appears lethargic but previously demonstrated behavioral symptoms, such as agitation, hitting, pacing or any other significant change in behavior, then ask the nursing staff what has changed. Any significant and drastic change should be reviewed and addressed. If you suspect that anti-psychotic medications are being used, next steps can include determining if there are untreated infections, medication reactions, or pain. It may take some time and the work from the nursing home staff, but it is mandatory to explore the possible reasons behind the behaviors to resolve them with something other than anti-psychotic medications.

Off-label use of anti-psychotic medications has happened frequently enough in the long-term care setting that the American Health Care Association (AHCA) is taking steps to address anti-psychotics and their use for persons with dementia. The AHCA Quality Initiative (Initiative) is a statewide attempt to improve quality of care in long-term and post-acute care centers. The Initiative, introduced in 2012, focuses on Hospitalizations, Customer Satisfaction, Functional Outcomes, and Antipsychotics. The Initiative’s goal for Antipsychotics is to safely reduce the off-label use of antipsychotics by 10% or maintain a rate of 8% or less in long stay residents and maintain a rate of 1% or less in short-stay residents by March 2021.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

Validation in Dementia Care: Thank You, Naomi!

Validation helps caregivers step into the world of a person with dementia, creating understanding and empathy.

The most powerful communication tool I’ve learned is Validation. Created by Naomi Feil, Validation is a method of communicating with people with dementia. Stepping into the world of the elder leads to understanding, therefore easing distress.

I’ve distilled the concepts of Validation into two questions.  They help me respond to someone with dementia who is confused and distressed.  First, I ask, “What is this person’s reality at this moment?”  The answer gives me a clue into her world at the moment, and then I can be with her in her world.

Then I ask, “What is she feeling right now?”  I can’t see a motion picture of what’s going on in her mind, but there are clues about how she is feeling. What is her facial expression, body language, or voice intensity telling me?

Now comes the action part.  First, I reflect her reality and then acknowledge the feeling.

Let me illustrate with a story about a woman in a skilled nursing facility where I provided Compassionate Touch® sessions. At around four o’clock, she fretted about getting home to make supper for her family.  Pacing the hall, she asked everyone how to get back home. As time passed, the more anxious and upset she became. The staff was expected to take her to dinner at five o’clock, not an easy task when she was so determined to leave.

What is her reality?  It’s time for her to get home to make supper for her family.  In her mind, her family would be back soon, and she needed to be there for them. Now that I understood where she was at the moment, I could be with her in her world.  What is she feeling? She seemed frustrated and increasingly angry and fearful.

I walked with her, asking simple questions about her family and what they liked to eat for dinner.  I acknowledged her feelings, saying, “it’s so frustrating to be late.” I used humor, “my son thinks he will just starve if I’m five minutes late with a meal!” She nodded and laughed with me.  At one point, I reassured her with touch by gently stroking her back and holding her hand. She became more present in the immediate moment, and she let go of her fixation on getting home.

What created the shift in her was not so much what I said, but rather that she felt seen and heard, therefore, validated. We walked again, but this time to the dining room where she joined her friends for dinner!

How do you feel when someone validates you?

Ann Catlin, OTR, LMT: For twenty years, Ann led in the field of skilled touch in eldercare and hospice. She has nearly forty years’ clinical experience as an occupational and massage therapist. She created Age-u-cate’s Compassionate Touch program and now serves as a Master Trainer and training consultant.