Tag Archives: Alzheimer’s disease

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.

Alzheimer’s Disease: What Would Maslow Say?

Human needs remain intact regardless of age, situation, or condition.

Abraham Maslow was an American psychologist who taught that survival needs must come before social or spiritual needs. Alzheimer’s disease impacts all these needs, for instance, as in a woman named Faye.

The need for physical survival. Faye relied on caregivers to assist with physical needs. 

The need to have personal security and to feel safe.  Faye didn’t recall recent events, so she didn’t realize where she was. Memories of past experience faded.

The need for a sense of belonging and connection to others. Faye had been active in her church.  The move to a nursing home separated her from familiar people and consequently became withdrawn and anxious.

The need to express feelings and have them acknowledged.  Alzheimer’s decreases a person’s ability to express thoughts. Faye was frustrated because care-partners didn’t understand her.

The need to give to others and to be treated with respect.  We all need to feel useful. We thrive with mutual understanding and respect.  However, people with Alzheimer’s may believe they have nothing to contribute.

The need for a sense of self and a connection to spirit. Many assume that Alzheimer’s robs people of their identity.  Although memory and cognition become impaired, it appears that the person living with dementia seems to retain a sense of self—the essence of who he or she is.

In conclusion, understanding human needs may help us to be a little more empathetic with people living with Alzheimer’s disease.

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 serves as a Master Trainer and training consultant.

“Remember This” Changes the Conversation about Dementia

Dementia Friendly Fort Worth recently sponsored Remember This, a participatory performance experience by the Texas Tech University School of Theatre and Dance.  Created and produced by Dr. Tyler Davis, Genevieve Durham DeCesaro, Rachel Hirshorn-Johnston, and Dr. Annette Sobel,  Remember This is about changing the conversation about dementia.

Remember This is poignant, inspiring, humorous and creative.  

Remember This is designed to spotlight conversations about and perceptions of dementia by using a myriad of performance approaches, including dance, improv comedy, and scripted theatre taken directly from interviews with people living with and around the disease.

The creators worked to research and publicize the humanity, as opposed to solely the tragedy of the disease, by approaching it as a set of interwoven stories.  Remember This is designed to promote a larger and louder public conversation about people living with dementia as well as the communities (e.g. caregivers, families, community business owners, hospitals, etc.) who care for and serve them.

The creative ensemble that performed, several who had loved ones with dementia, was simply an amazing work of art.  Hats off to the visionaries, researchers,  and creative minds of Remember This.  Having young people share in the dialogue is expanding the generational reach of dementia.

Thank you to Dementia Friendly America, of which Dementia Friendly Fort Worth is a part of, Alzheimer’s Association and many others who are changing the conversation to the broader public about dementia – how to better understand dementia,  openly accept persons living with dementia as vital members of the community, and to help those caring for persons with dementia.  And finally, to provide more funding for training, support, resources, and research – all urgently needed to meet the fast-growing numbers of persons living with dementia and those caring for them,  in the U.S. and throughout the world.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  Pam is the creator of the internationally acclaimed Dementia Live® simulation and awareness training program.

 

Down Syndrome and Alzheimer’s – the Challenges of Diagnosis

Research confirms that by the age of 40, almost 100% of persons with Down syndrome who die have changes in the brain associated with Alzheimer’s disease (AD).  Understanding this link and the challenges of a diagnosis of AD in persons with Down syndrome is important for families and healthcare professionals.

Down Syndrome occurs when a person has three copies of the 21st chromosome instead of the normal two copies.  Studies show that one of the main genes responsible for AD is on the 21st chromosome and is more active in persons with Down syndrome.  Because of this extra copy of the Alzheimer gene, virtually 100% of people with Down syndrome will develop the plaques and tangles in the brain associated with AD, but not necessarily the same memory loss.  Although research is not complete, it is estimated that about 50% of persons with Down syndrome will develop the characteristic memory problems of AD before age 50.

Testing for AD in persons with Down syndrome is often challenging.  Diagnosis of AD is difficult for a number of reasons:

  • Persons with Down syndrome are susceptible to hypothyroidism and depression, which are both reversible conditions but often go untreated and can be mistaken for AD.
  • Side effects of medications taken for either of these conditions can also mimic AD.
  • Normal AD skills testing are often not applicable for persons with Down syndrome simply because of learning differences.
  • Communication skills of persons with Downs syndrome may affect the results of assessment testing.

Families need to watch for signs of AD, especially as their loved one reaches middle age years.  Diagnosis is important, but also education, resources, and support are especially critical for care partners.  Learning to better respond to surprising new behaviors will prepare families for AD symptoms, such as changes in judgment,  processing speed, memory recall, to name a few.

Care partners, either family or professionals, need to have access to new communication tools, understand that care processes will need to be adjusted as well as home or residential changes to their living environment.  Staff and family training will help care partners better serve their residents and loved ones.

Person-centered care approaches to help persons with Down’s syndrome who have developed AD is key to maintaining a loving, trusting environment, where they feel loved, valued and are treated as individuals.

Pam Brandon is President and Founder of AGE-u-cate® Training Institute and a passionate advocate for culture change, improving the quality of life of aging adults, and transformative training for professional and family care partners.  She is the creator of the internationally recognized Dementia Live® simulation experience and collaborated with expert Ann Catlin on the transformational Compassionate Touch® training.  

References:

http://Dementia.org.au

Home