Person-first: I'll Be Me & I'm Still Here

A person living with Alzheimer’s Disease (AD) and related dementias is first a person, and only then someone with a disease.  There is no known prevention or cure for AD, but there are treatment options for cognitive and behavioral symptoms.  Social relationships and supports can be seen as forms of non-drug treatment.

Because relationships are built on trust, it is disturbing to hear and read advice to engage in therapeutic lying as a way to connect with persons with dementia.  In “Ten real-life strategies for dementia caregiving,” Family Caregiver Alliance offers tip #4: 

“Therapeutic Lying Reduces Stress. We tend to be meticulously honest with people. However, when someone has dementia, honesty can lead to distress both for us and the one we are caring for. Does it really matter that your loved one thinks she is the volunteer at the day care center? Is it okay to tell your loved one that the two of you are going out to lunch and then “coincidentally” stop by the doctor’s office on the way home to pick something up as a way to get her to the doctor?"

In “A Dark Side of Dementia Care,” geriatric psychiatrists James Ellison and David Hsu explain:

“Therapeutic lies, or fiblets, are often used to reduce stress and manage the anxieties and disruptive behaviors of demented inpatients, long-term–care residents, or the elderly who are cared for at home, who are not reassured by simple distraction or redirection . . . Lies that reduce suffering and stress in patients unable to fully appreciate the cause of distress can be beneficial. Clinicians sanction their use in dementia care and see them as a manifestation of the ethical imperatives of beneficence and non-malfeasance.”

Amy Tan called her mother’s dementia “a truth serum,” which enabled getting to know her mother on an emotional level (“Even when you're losing your memory and you're old, you go back to that childhood part of you and those memories, those emotions and what made you are still there") and served as inspiration for her fourth novel, The Bonesetter’s Daughter (2001).  However, she told The Guardian about moving her mother into an assisted-care residence through subterfuge:  "We told her it cost $750 a month - her social security - and she thought it was a bargain. In all the places she's lived, she was the happiest there. She felt safe. When she was dying those last three weeks, we all moved in, 18 or 20 of us, playing card games and mahjong, eating takeout food, taking turns to stay overnight." 

  

In September 2014, Mental Health Foundation published a literature review on Dementia—what is truth? Exploring the real experience of people living with more severe dementia.  This study found that while lying to a person living with dementia is considered unethical and damaging to the person’s right to autonomy, the practice of lying is pervasive and sometimes considered justifiable in dementia care.  It also noted alternatives to therapeutic lying to persons with dementia include holistic approaches like Validation therapy, Habilitation therapy and Functional analysis of needs.   

In The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s and Other Dementias (3rd edition, 2012), Naomi Feil, MSW, focuses on empathetic listening, rephrasing, mirroring, meeting people where they are (including their view of reality), being aware of their emotional and psychological needs.  Validation theory is based on the idea that very old people, who have ignored developmental life tasks in earlier stages in their life, enter a period in which they feel a need to resolve unfinished life tasks (e.g., Erikson’s ego integrity versus despair, Maslow’s self-actualization) before they die in peace.  Neurofibrillary tangles and senile plaques are found in brains of all people with AD, as well as people who do not exhibit any signs of dementia or disorientation.  Feil has observed that many people over age 80 survive damage to brain cells and remain orientated, so they do not need Validation because they validate themselves.  Disorientation in very old people may represent their struggle to restore the past to heal old wounds, though they have lost memory and present-day factual thinking; and despite disorientation, people retain universal human need to belong, to find identity and to express themselves.  Validation allows people to be who they are. 

Feil does not endorse patronizing with therapeutic lies (pretend to believe what disoriented persons says is true) to placate a person with dementia.  Instead, she advocates the real work of exploring the depth of an older person’s personal reality, as there are many levels of consciousness, by asking open questions (starting with who, what, when, where, how) to stimulate conversation without judgment (avoid asking why, which is a request for explanation for our benefit, and does not help person express self).  Feil insists that validation practitioners always tell the truth and are honest because very old people, no matter how disoriented, know what is truth, who is honest and who is lying; if you lie, an old person may quiet down but not trust you.

This month I attended a free documentary screening of Glen Campbell: I’ll Be Me, hosted by Elder Care Alliance, a non-profit organization of senior living and dementia care programs in the San Francisco Bay Area.  The heartwarming documentary opens with Glen and his fourth wife Kim watching home movies: Glen doesn’t recognize his younger self and former wives from his previous three starter marriages, so Kim lets him know "who's that" and Glen exclaims, “I’ll be me!”  

In 2011, Glen went public with his AD diagnosis to raise awareness and then launched an impressive 151-stop Goodbye Tour with his family (two sons and daughter played in band) over an 18-month period that ended in Napa two years ago.  It was inspiring to see Glen continuing to do what he loves—being present to play guitar and sing (with teleprompter help)—while being supported by family, friends, fans, and his faith.  His Elvis impersonation is hilarious! Glen’s neurologist thought engaging in music (his first language) helped retain his cognitive function.

Though I hadn’t heard Glen Campbell’s music for some time, I could recall Jimmy Webb’s catchy lyrics in Wichita Lineman (“And I need you more than want you, and I want you for all time”) and Galveston (“I am so afraid of dying before I dry the tears she's crying”). 

After the Goodbye Tour ends, Glen’s daughter Ashley testified before Senate hearing about the devastating impact of Glen’s AD on family and need to end AD.  This candid documentary also showed his off-stage behaviors: licking his plate, angrily accusing his neighbor of stealing his golf clubs, forgetting he received Lifetime Achievement Award at Grammy’s the night before, etc.

Earlier this year, Alzheimer’s Association honored Glen Campbell with its inaugural Glen Campbell Courage Award for going public and advocating to find a cure for AD.  At 78 years of age and at the 6th stage of Alzheimer’s, he moved to a memory care facility. 

  

Elder Care Alliance, which utilizes I’m Still Here: A New Philosophy of Alzheimer’s Care (2009) in its dementia care program, also distributed copies of this book by John Zeisel, who holds a Ph.D. in sociology and environmental design background.  In his first chapter, Embracing Alzheimer’s, Zeisel suggests that treating people with AD "the old way" as people who can live active lives in society was often better, rather than as patients being institutionalized and hidden from society.  To build healthy relationships with those living with AD, one has to connect through those capacities and facilities that don’t diminish with the progression of AD, or at least diminish most gradually (e.g., hardwired skills like facial expressions, responses to touch, singing, landmarks for way-finding).  His message throughout the progress of AD is: “I’m still here, please help me, I love you, and don’t give up.”

Zeisel provides the following five rules of communication:

1. Hear and respond to the other person’s “reality”
2. Be honest: by being yourself, expressing own reality; honesty includes responding with empathy to person’s definition of reality
3. Always address the person directly
4. Don’t test! Give answers (e.g., “I am your daughter”) rather than ask questions (e.g., “remember me?”) to make person feel competent and in control
5. Don’t say “don’t”: divert and redirect instead—kinder and more effective to change the subject (divert from inappropriate action) so that the person focuses on something else, and then suggest another, safer alternative (redirect)

Next, Zeisel provides seven rules of relationship building to understand and embrace the other person for who they are by changing your own behavior:

1. Don’t be a rock—respond, don’t react
2. Be present!
3. Do as little as possible to help the person be successful—but leave nothing undone
4. Use all the senses: Person with AD gets headache from too many words because brain’s language centers (Wernicke’s and Broca’s areas) aren’t working well.  Instead of words only, use sound, sight, taste, odor and touch to communicate.
5. Find the person’s self-expression and invoke them through shared activities engages that part of a person that relaxes him/her
6. Principle of “I” in the “We”: understand who we are within greater collective whole
7. Follow the flow of the day: providing person a daily flow of things to do that engages mind, body and spirit helps live a more normal life—“the more natural the day, the more the day is treatment for the disease”

Zeisel reminds us that the person living with AD is the same person (before the diagnosis), but just can’t draw on life experiences and express them in the same way so we can take the initiative.  More tips:

• Amygdala emotions: Ask person with AD for expression of emotions (how they feel about topic) versus cognitive data.  
• Memory joggers: In conversation, bring up topics (particular aspects of life of person with AD) to trigger access to memories.
• Be conversation generator yourself: be prepared to talk, even if you have to carry conversation as monologue, because don’t expect person with AD to draw on memory bank of topics and recent experiences to generate conversation.

Accepting and embracing the changes that come with living with AD is a demonstration of unconditional love for personhood.