Connecting with Dementia Sufferers

Empathy, 'Validation Method' as published by Naomi Feil and Music.

May 15, 2024

Hello, friends! If you’re new to Carer Mentor, welcome. Thank you for being here.

The website is a hub of practical tools, resources, and insights I’ve researched and used as a global commercial leader, mentor, and caregiver. I hope it can provide you with resources and empathy to support you on your caregiver journey or simply inspire new ideas.

This week is Dementia Action Week (13-19 May 2024), in the UK Alzheimer’s Society.

These are Resources and Articles related to Dementia support.

Connecting with Dementia sufferers

Previous articles have focused on Emotional Agility, Growth mindset, and Misconceptions of Emotions, which are essential for exploring, navigating, and expressing what’s happening inside ourselves.

Dementia sufferers may be less articulate, have issues cognitively processing ideas, or become less able to express what they need or feel. However, like anyone, they do feel and need things. The disabilities due to the disease create an additional wall that, over time reinforces their inability to connect with others.

How can we connect with Dementia sufferers?

While Dad could converse easily, I felt much more than he said. Decoding ‘Dad-speak’, the passive-aggressive moments or self-recriminations became routine. I learnt how to take my cues from him and his mood. Love gave us patience and open-heartedness, but this also constituted a perpetual hypervigilance that syphoned off energy like ten fire hoses in a rager.

The ‘doing’ of caregiving and interfacing with stakeholders is exhausting and stressful. However, the harder part is deciphering the needs of someone who has difficulty expressing themselves and their emotions due to illness or is simply less adept at articulating their needs and feelings. Every situation, personality, and context is unique and beholden to dynamics that evolved over years of familial/friendship relations.

Caring with empathy encourages us to connect with our loved ones to help them express difficult emotions, and it doesn’t have to be through words. Music, art, photos can facilitate a connection.

The trouble is that caregivers are the human translators and facilitators for their loved ones. It requires us to be open vessels to respect, receive, bear witness to, and even carry those emotions. This emotional communication is fraught and heartbreakingly bittersweet and can place an additional burden on our wellbeing. It’s no wonder caregivers burn out. It’s no wonder that caregivers have difficulties expressing the full amplitude of what they’re feeling to others who are less fluent in the ‘caregiver’ language.

Caregiver-empaths who translate for others can be lightning rods of emotions. We may ground others, but the shock can fry our souls, especially with repeated emergencies and crises. This is why it is important to learn emotional agility and connect with other caregivers and your community. Caregivers need empathetic support.

Introduction to Naomi Feil and Validation Therapy

I discovered Naomi Feil's work only recently.

This video shows a lady with advanced Alzheimers who uses repetitive hand motions to communicate. This may be too difficult for some readers to watch.

The lady singing is Naomi Feil ‘the godmother of person-centered care’ who developed the Validation method.

In this June 24 2022 interview with Naomi Feil, on her 90th birthday, she explains the need for Empathy and empathetic listening. Many people think that the the older person is losing control, but they are expressing themselves and need someone to listen. Without this active listening an older person may stop expressing themselves and their emotions and retreat into themselves. ‘A living dead person, a zombie’. If someone really listens then the older person can be relieved of their emotions and feel heard.

In this interview Naomi Feil describes ‘Validation Therapy’

The caregiver/validation therapy practitioner clears out their own emotion and honestly removes how they are feeling so that they can be open to feel what the older person is feeling.

When you centre yourself, breathe out and through your emotions you can meet that person where they are, in what they are feeling and accept them just the way they are. When you do this you can help the person meet their basic needs: to feel love, to feel active/useful and respected and enable them to fully express whatever they are feeling. You can help them feel seen, feel respected and to know they’ve been heard and understood. There is an underlying need or reason behind the literal words or action that they are expressing.

Naomi Feil died on 24 December 2023 at her home in Jasper, Oregon at the age of 91. Here is the New York Times Obituary. An excerpt of the article:

Mrs. Feil was a 24-year-old social worker, convening a group of patients diagnosed as “senile psychotic,” when a staff psychologist at the Montefiore Home for the Aged in Cleveland laid the foundation for what would become the method she called validation therapy.
“He taught us when feelings are ‘validated’ they are relieved,” Mrs. Feil explained on the website of her nonprofit Validation Training Institute in Pleasant Hill, Ore. “‘You are validating your residents, helping them release their pain.' When social work students asked me what I was doing, I answered: ‘Validation.’ And so a new way of relating was formed.”
Her method calls for caregivers to empathize with disoriented individuals in an effort to reduce their stress and support their dignity, rather than try to impose reality on them.
…As she refined her methods, she founded the nonprofit Validation Training Institute in 1982. She directed it until 2014 when she was succeeded by Ms. de Klerk-Rubin, her daughter.
“She was a pioneer in this area of person-centered dementia care,” Sam Fazio, the senior director of quality care and psychosocial research at the Alzheimer’s Association, said in a phone interview. “What’s key in connecting with a person with cognitive impairment is to meet them in their reality instead of expecting them to meet us in ours.”
Her theory, like a related one called therapeutic deception, was not without its critics. The main objection is that it condones lying. The British Alzheimer’s Society has said that “we struggle to see how systematically deceiving someone with dementia can be part of an authentic trusting relationship.” Others argue that lying, or accepting a patient’s delusion as reality, is justified when it is in the patient’s best interest.
There is still no consensus.

The Validation Training Institute

Validation was a maverick concept back in the 1970s when Feil first proposed that caregivers ‘step into the world of the disoriented old-old’ and stop using reality orientation, diversion or lying. Her books, and workshops (she led over 1000 in the U.S. and 1000 in Europe) spread her messages: understand that there is a reason behind the behavior of disoriented older adults and use empathy to accompany them in their final stage of life. Her work inspired a new generation to work “person-centered.”
Naomi Feil founded her non-profit organization, the Validation Training Institute (VTI) in 1982. VTI is honoring her final wish, to continue her legacy with the same energy and passion that she demonstrated over 60 years.

So, how does validation therapy work?

According to Naomi Feil’s book, The Validation Breakthrough, validation therapy follows ten basic principles:

All people are unique and must be treated as individuals.
All people are valuable, no matter how disoriented they are.
There is a reason behind the behavior of disoriented old-old people.
Behavior in old-old age is not merely a function of anatomic changes in the brain, but reflects a combination of physical, social and psychological changes that take place over the lifespan.
Old-old people cannot be forced to change their behaviors. Behaviors can be changed only if the person wants to change them.
Old-old people must be accepted non judgmentally.
Particular life tasks are associated with each stage of life. Failure to complete a task at the appropriate stage of life may lead to psychological problems.
When more recent memory fails, older adults try to restore balance in their lives by retrieving earlier memories. When eyesight fails, they use the mind’s eye to see. When hearing goes, they listen to sounds from the past.
Painful feelings that are expressed, acknowledged, and Validated by a trusted listener will diminish. Painful feelings that are ignored or suppressed will gain strength.
Empathy builds trust, reduces anxiety, and restores dignity

A last word..

I hope through the emotional agility articles we can each learn more about emotional granularity and expressing ourselves, so that we can offer others empathy and sustain our own mental wellbeing.

Person-centered care, for me, is part of our language of being human. I hope we can each modulate how we communicate with each other, to truly listen to each others needs.

P.S You may need tissues while watching this: Vicky McClure and the Dementia Choir Sings again (BBC Documentary October 2022)

Here is a link to their website

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