Let’s Keep It Real!

By / Posted on March 3rd, 2019

Anne Ellett, N.P., M.S.N. Dementia Specialist

A neighbor of mine, recently diagnosed with dementia of the Alzheimer’s type, has shared with me that he hardly ever leaves his house anymore, because he doesn’t want anyone to know his situation.  How heartbreaking this is for him and illustrates the powerful stigma that is associated with dementia.  This is a man who developed and managed several successful companies and has the reputation in the business world as a “take charge” kind of person. Now he’s hiding in his house…

What’s his fear?  He held my hand and said, “ I don’t want to be treated as a child.”

The stigma attached to dementia is real and has emotional and social implications.  Within just a short time, my successful, confident neighbor has lost his self-esteem and is fearful of the judgement of others.  The stigma and devaluation that is associated with dementia can be paralyzing, as witnessed by my neighbor’s fears and abrupt change in his social interactions.

Facing stigma is often a primary concern of people living with Alzheimer’s and their care partners. Those with the disease report being misunderstood because of the myths and misconceptions others have about the disease. https://www.alz.org/help-support/i-have-alz/overcoming-stigma

One of the most common myths and misconceptions about the diagnosis is that people become “child-like” or retrogenesis (aging in reverse).  Of course, this isn’t possible and an adult with the diagnosis of dementia is and always will be an adult, with their full history of accomplishments and talents as part of their identity.

What can we do to help counteract this stigma which marginalizes PLWD and assumes they’re “unable”?

At the Green House Homes, we strive to decrease the stigma and devaluation of PLWD and treat them as adults – not children.  We can approach them as adults and involve them in adult activities.  Relate to them as adults, not children, and don’t assume they “don’t know”.  How often I hear from nurses and physicians that  “They won’t know the difference.”

On a recent tour of a nursing home, I witnessed a group of female residents, all PLWD, being handed baby dolls out of a basket that was being passed around.  Some of the women tried to cradle and rock the dolls while others appears uninterested and left them lying in their laps.

The distribution of the baby dolls I’m sure came from the staff’s good intentions to engage the women and also comfort them.  But the vision of the women being handed out baby dolls seemed like a real example of reducing their abilities to child-like levels, while assuming “they won’t know the difference”.

If a PLWD has always been a doll collector and that is part of her/his story, it would be so fitting to surround them with their doll collection. But if a person does not have that history, why offer them a doll, a “fake” baby?  Is the assumption being made that they won’t know the difference? Is the assumption being made that they don’t have the ability to respond or have a relationship with a real baby?

Investors are developing more and more almost real baby dolls and robotic pets to comfort and distract PLWD.  I am frequently asked to endorse and introduce these life-like dolls and pets to the PLWD that I work with.  I can’t do that, because the image of a group of PLWD holding plastic dolls immediately speaks to their inabilities and losses.  Anyone can look at a group of grown women being handed out dolls and think, “These aren’t capable adults, why would they be holding dolls instead of real children”?

One ability that PLWD retain is the ability to have real relationships.  Yes, a PLWD might respond to a doll or robot, but just watch them with the real thing!  The interactions, the feelings, the real relationships are evident and powerful.  When someone tells me, “But she loves her doll!”, I say, “She’ll love a real child even more.”

So if we want to comfort and engage PLWD, why would we offer fake babies and pets? More and more care centers are partnering with children’s’ play groups and preschools to have regular interactions.  PLWD can provide warmth and real love to the young children.  And many places now have dogs and cats who reside with the PLWD, offering opportunities for real interactions and purpose.

As a professional working with PLWD, I remind myself to focus on retained abilities and talents of a PLWD, not on their losses. And to always be mindful that I never want to treat them as children or in any way devalue them.

Let’s bring real children, real pets to PLWD and watch real relationships develop!


The Awfulness of the National Institute on Aging’s ECT Study

By / Posted on February 9th, 2019

Anne Ellett, N.P., M.S.N. Dementia Specialist

I was deeply distressed to learn that the National Institute on Aging (NIA) is sponsoring a trial for the use of electroconvulsive therapy (ECT) for people living with dementia (PLWD) who exhibit severe aggression and agitation. Not only that, according to a press release on the website of one of the participating organizations, the study is touted as the “first randomized, double-blind, controlled study of ECT for agitation and aggression in Alzheimer’s dementia,” which means that it will compare ECT against other “standard therapies” such as antipsychotic medications and behavioral therapies.

This is inhumane and unacceptable, and I join many other professionals in our field who are also appalled by this study, which is funded by an $11.8 million grant.

I believe there are several factors behind the approval of this “treatment” by NIA. Let’s start with the term “behavioral and psychological symptoms of dementia,” or BPSD. BPSD refers to the actions of PLWD, such as confusion, aggression, anxiety, refusal of care, etc., as “symptoms” due to their diagnosis of dementia. And if actions are considered symptoms, then this provides validation for medically treating these symptoms, because it allows for symptoms to be considered hallmarks of a disease state.

I’ve been a nurse for many years, long enough to remember when we responded to actions of PLWD such as confusion or aggression by tying them to their bed or chair. That was acceptable nursing practice! I can be grateful that we’ve moved beyond that…or have we?

The first-line medical treatment for “behaviors” has been the prescribing of strong antipsychotic medications. Unfortunately, even when the FDA came out in 2005 with a “Black Box” warning about the risks of prescribing these medications for PLWD, their usage has increased. In an attempt to decrease the use of these risky medications, the Centers for Medicare & Medicaid Services (CMS) now requires documentation of non-pharmaceutical interventions prior to prescribing antipsychotics, in addition to informed consent.

Even though CMS has established a goal of continued reduction of the usage of these prescription medications in nursing homes it is still common for PLWD to receive these medications.

PLWD are often devalued and stigmatized by both the public and professionals. Once diagnosed, they are perceived as unable to participate in decision making, expressing their needs, and often are considered child-like.

Therefore, when PLWD express their preferences by trying to leave where they have been assigned (known as eloping), or resist care by someone they don’t know, or cry because of loss of meaningful and significant relationships, their actions are seen as symptoms of a disease, rather than communications.

What if we considered their actions as personal expressions, or as unmet needs instead of symptoms to be diminished by medications or other treatments? What if we looked at what is going on in their environment and also at their personal histories and put together a plan for interactions that could be meaningful for them?

Strong antipsychotic medications that were never meant for use among older adults, and now ECT therapy? Let’s stop the use of the term BPSD and instead start discussing what are the unmet needs and challenges of the PLWD.

Kate Swaffer, a well-known dementia advocate, and a PLWD, expressed her fears about this study and said, “ECT is surely just another form of RESTRAINT?????” (emphasis is hers.)

As professionals and family members, if we continue to dismiss normal human actions (Wouldn’t most of us resist intimate care if we didn’t know the person? Wouldn’t most of us be looking for a door to exit if we didn’t know where we were?) as symptoms to be medically treated, we are denying PLWD their ability to communicate and express their needs.

If actions are labeled as “out of control” or aggressive, without determining what someone with PLWD is attempting to communicate, we have pathologized normal human actions.

 

Anne Ellett is a dementia specialist for The Green House Project (GHP), an organization that seeks to radically transform nursing homes by partnering with aging services providers to reinvent care and empower the lives of people who live and work there. Anne created GHP’s Best Life dementia care initiative, which builds on the organization’s core values of meaningful life, empowered staff, and real home.


Authenticity, Why it Matters

By / Posted on August 1st, 2017

Anne Ellett is a certified Nurse Practitioner (NP) with more than 20 years of experience in elder living and memory care, and served as Sr. Vice President with Silverado Senior Living, an award-winning Assisted Living company specializing in dementia care.  Currently, Anne is owner/CEO of Memory Care Support, LLC, a consulting agency working with senior housing professionals as they develop state-of-the-art health and wellness and memory care programs.

In Green House homes, authenticity matters – for example, we strive to build real homes, not fake homes, not pretend homes, not places that look like a home but really feel more like an institution.  We want to create that sense of belonging, of warmth and deep knowing that we all crave.  We want the elders to feel connected to the people and the space.

Best Life supports elders living with dementia (ELWD), and here too, we strive for authenticity.  For many ELWD, their experience has been one of loss and lack of choice.  Family, friends, and professionals may respond to their diagnosis rather than to the individual person, focusing on inabilities rather than retained talents and abilities.  The opportunities for real, authentic life experiences may be taken away, justified by saying, “It doesn’t really matter, they won’t know the difference.”

Best Life understands that being authentic does make a difference to elders and those working closest to them.  We know that real friendships, real relationships are meaningful.  One of the Best Life core principles is “Elder-directed, relationship-rich living.”  Offering opportunities for ELWD to sustain old relationships as well as the opportunity to form new ones is part of a normal life, and should be part of living with dementia.

Relationships with pets can also be important for ELWD.  How many of us enjoy the companionship of our pet cat or dog?  The joy that a dog brings when he puts his head in your lap, or a kitten who runs through the house chasing a ball of paper brings a lot of smiles.  An ELWD who can assist with feeding or walking the dog, or enjoys rubbing the neck of their favorite cat knows the significance of rapport with live animal.

As I visit many care locations, I am sometimes shown a community’s “pretend” pet animal program.  There are many varieties available of these fake pets, all of them claiming to bring joy to the elder.

Best Life focuses on real relationships built on retained abilities. If an ELWD is offered a robotic pet, they may respond and stroke it, but there’s no relationship, no purpose, no bond of love that is formed.

What would be the reason for not having a real pet – a loving dog or a real cat who can be the “diva” of the home?  Do we offer a robotic pet because again, we think, “It doesn’t really matter, they won’t know the difference?”  The magic that happens between an ELWD and a real pet cannot be substituted by offering a mechanical toy.

I’m reminded of one woman I knew who had recently moved into a home and was quickly labeled as a “challenge” by the care team.  Joan yelled out frequently, disrupting other elders.  She criticized both staff and elders and refused to participate when invited to meals or engagements.

As an annual event, the home sponsored a pet adoption day by the local animal shelter.  In preparation, the ELWD helped clear the patio where the public would be coming to view the adoptable pets. On the day of event, many volunteers with a variety of dogs and cats showed up at the home and as the volunteers and pets arrived, the elders greeted each one and welcomed them to their home for the pet adoption.

Joan initially resisted becoming involved, but as the dogs arrived, she focused on one small dog who was blind in one eye and was anxiously barking a lot.  As she pet the dog, it seemed to relax and finally laid down and closed its eyes.  Joan said, “It just needed some love,” and continued to sit by its side for the entire afternoon.

At the end of the day, the dog had not been adopted and the care team asked Joan if she would like to adopt it?  The look on Joan’s face said it all.  The significance of the friendship between Joan and her dog Freddy (Joan’s chosen name for it) was evident as the months passed.  It seemed Joan found purpose and peace when she and Freddy would sit together or as she fed it some of her favorite chicken dish that she had saved from her own dinner plate.

Best Life encourages an authentic, real home where an ELWD has opportunities for a life that is purposeful and relationship-rich. learn more>>

 

 

 

 


Green House homes in Florida are Supporting Elders to Live their Best Life

By / Posted on June 26th, 2017

Anne Ellett is a certified Nurse Practitioner (NP) with more than 20 years of experience in elder living and memory care, and served as Sr. Vice President with Silverado Senior Living, an award-winning Assisted Living company specializing in dementia care.  Currently, Anne is owner/CEO of Memory Care Support, LLC, a consulting agency working with senior housing professionals as they develop state-of-the-art health and wellness and memory care programs.

The Green House Project recognizes that providing a life affirming, dignified environment for elders living with dementia (ELWD) is imperative, especially given that over 80% of people living in long term care have some form of cognitive change.   Supporting these elders to thrive is a multifaceted process, and involves culture change.  Best Life is a new initiative, designed to support Green House teams, by building on the core values of Real Home, Meaningful Life and Empowered Staff, and providing enhanced education that focus on principles such as:

  • Power of Normal – normalizing programs and environments
  • Integration with greater community
  • Celebrating retained abilities
  • Dignity of Risk
  • Age-appropriate interactions
  • Elder-directed, relationship-rich living
  • Advocacy

 I had the pleasure of delivering this guided process of implementation at The Woodlands at John Knox Village (JKV) in Pompano Beach, Fl.  JKV is a wonderful location incorporating independent living, assisted living, a nursing community and 12 Green House homes onto one campus!  Their 12 homes have barely been open a few months but the leadership at JKV has the desire to strive for excellence in helping those with dementia thrive.  Educator, Dolores Hughes said, “We feel equipped with tools to implement immediately, and also challenged to see people living with dementia in a new way. Best Life is an eye-opening experience.”

BEST LIFE supports elders living with dementia (ELWD) to have choice and dignity, while living in the least restrictive environment possible.  Often, restrictions are due to our own perceptions of the capabilities and interests of ELWD.  Typically, we are trained to see the diagnosis first rather than the whole person, which can limit the experiences and choices we offer to the ELWD.  For example, as a nurse, I was trained to label “patients” by their diagnosis, i.e., the hip fracture in Room ###, or the patient with Alzheimer’s in Room ##.

When we use labels to identify someone, that prevents us from seeing the whole person and instead we focus on their loss of abilities,   “they’re not able to ______ (fill in the blank) because they are living with dementia, they would not be interested in doing ______ (fill in the blank) because they are living with dementia.”  In BEST LIFE, we learn to look beyond losses and inabilities toward retained capabilities and emerging talents.

As professionals, it’s important to examine our own training in the traditional model which emphasizes the diagnosis rather than the person.  Are we limiting the experiences we offer to ELWD?  For example, are we restricting them, perhaps from our own bias and belief that we need to segregate ELWD for their own safety?  New research shows that there is value in offering ELWD frequent experiences with the larger community and with younger generations.

BEST LIFE has three areas of focus: Culture, Meaningful Engagements, and Health and Well-being.  An entire day is devoted to each of these topics, looking both at our own biases and misperceptions of ELWD, and also examining new research from around the globe on new techniques that are beneficial and increase choice and dignity for ELWD.

During the BEST LIFE workshop at JKV, one of the most poignant experiences was when the participants shared what they would want the shahbazim to know about them if they were living with dementia.  Aside from details such as their favorite foods or activities, the participants overwhelmingly requested that they be enabled to continue to have fun and laughter, and opportunities to try new things, and also to continue to contribute and “give back”.

There are already stories of elders connecting with life in new ways, as a result of this new focus on retained abilities and strengths. There is an elder in The Woodlands who plays dominoes every day after lunch and loves to teach anyone else, and an individual who recovering in short term rehab and plays his harmonica.  Knowing him is a priority,  and his full personality shines!    There is a new garden growing in another one of the homes—it is amazing how nature, growth and learning enhances well-being for everyone.