Category Archives: The Family Caregiver

Creating a Sustainable Culture of Compassion

I have to be direct in asking – isn’t this every elder care community’s goal?  After all, we should be in the compassion business, and sustainability is the hot topic today.  Creating a sustainable culture of compassion – makes sense right?

As I write this I can see my readers head shaking.  “It would be ideal, however…….”.  And the list starts adding up quickly of all the barriers to creating a sustainable culture of compassion.

Let’s break this down a bit, starting with Creating.  To create is to bring into existence;  to bring about a course of action or behavior;  to produce through imaginative skill.   Creating should be a blend of many and in elder care, that means everyone from our residents, dining staff, front-line caregivers, housekeeping, clinical staff, administrators and right “up the line” to the CEO.  It’s not a top-down mechanical procedure.  We create things and ideas by listening to each other, churning ideas and then embracing it all with passion.

Sustainability if the ability to be maintained;  In elder care, maintaining a high level of care for each resident is critically important.  High levels of satisfaction from residents, families, and staff are benchmarks upon which our business either succeeds or not.  Sustainability takes a strong commitment from leadership and perseverance to maintain standards even when the going gets tough.

 Now we look at a Culture of Compassion.  Wow, now we’re getting to the real meat here.  Compassion is simply empathy and concern for others.  Culture is the characteristics and knowledge of a group of people.  It’s a collective whole that creates a certain environment.
Aren’t we in the compassion business?  
Most certainly we are in the compassion business and I believe most of us found our way to senior or elder care because somewhere in our life experiences we found that this caring business is pretty dog-gone important to others and ourselves.
Why, then do we struggle with creating a sustainable culture of compassion?  Are we not looking at the vision we must create as leaders?  Are we not listening enough to those who are really doing the work that makes our business?  And, goodness knows, are we forgetting to listen to the very people who live in our communities?
I believe that creating a sustainable culture of compassion is not only doable but essential.  So many good things will happen when compassion cultures are created and maintained.  It is a domino effect of great leadership, teambuilding, happy residents, staff and families.  It’s getting down to the basics of why we do what we do every single day.
To coin a phrase, Just Do It!
Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  She led the development of the Compassionate Touch® program.  She may be contacted at pam@AGEucate.com.

“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.

 

Are we Confusing Life Enrichment with Activities in Dementia Care?

What exactly is the meaning of Life Enrichment?  

Quite simply, Life Enrichment it is the act of bringing purpose and joy to persons living with memory loss. As dementia progresses, engaging in a life skill or routine task becomes increasingly challenging, and seniors need the support of someone who can adapt activities so they can still feel a sense of accomplishment, success and enjoyment.

How do Activities differ?

In senior care,  Activities are the entertainment, planned events, exercise classes etc. that are posted on weekly and monthly charts for anyone who is able to join in.

So, the question then is, are we too often confusing Life Enrichment with Activities?   

Too often, the answer is yes.  These are not the same, although they often intersect.  Person-centered or resident-centered care models must focus on the individual (life enrichment), as opposed to the whole (activities).    While activities are important to everyone living with dementia, those activities must bring purpose and joy to the individual, giving them a feeling of accomplishment.

When we fulfill the purpose, joy, accomplishment needs of an individual, we have a life enrichment model.  For each person, that may or may not coincide with the activities that are offered to all the residents.

Digging Deeper into Life Enrichment

The needs of persons living with dementia change, sometimes daily or even hourly.  Resident-centered care starts with understanding who they are now,  and their life story, allowing us to capture the who, what, why, when and how of their life.  Why is this so critical? Those long-ago snapshots allow us opportunities to engage with that person’s memories that are still intact.  Persons with Alzheimer’s disease and other forms of dementia will most likely retain those distant memories of their younger years while short-term memories fade.

When we take the time to dig deeper,  we discover the person they once were – and still are!  Let’s look at an example:

Kate came into memory care with mid-stage dementia.  She was listless and had no interest in taking part in the Activities that were offered daily.  On the surface, you would think Kate was depressed and had no interest at all.  After a life history assessment and talking with her family, the staff learned that Kate was a landscape architect, master gardener, and avid hiker!  No one would have guessed coming in that Kate had such an interesting career and such knowledge and passion for gardening.

What might life enrichment look like for Kate?  Spending time in the community’s outdoor garden, possibly taking part in garden activities with assistance, certainly photos of projects that she designed as a young architect would capture memories and spark conversation.  How about finding out where some of her hiking adventures were and finding  National Geographic and Travel shows that she might engage with?  Perhaps your community hasVirtual Reality programming in place.  There are tremendous products now that literally transform life experiences for persons with dementia. A memory basket of gardening items, tools that she used in her career and personal photos of her gardens, hiking adventures and certainly her projects could all be kept in a place where staff and families can access easily to engage in quality time together.

Kate may not find any interest in the Activities offered, but that doesn’t mean Life Enrichment has been sacrificed.  For Kate, what gives her purpose, joy, and feelings of accomplishment are not found in the activities area.  That’s okay!  We’ve found the sparks with Kate, and maybe our activities can incorporate some of her needs, but we are certainly not relying on our Activities program to provide Life Enrichment to her as an individual.

For more information on reminiscence training and other innovative dementia programs, please visit http://www.AGEucate.com

Pam Brandon is President/Founder of AGE-u-cate® Training Institute, the creator of the Dementia Live® simulation experience, and Flashback™️ Reminiscence Training.  She is a passionate advocate for aging adults and those who serve them.  Pam may be contacted at pam@AGEucate.com

Understanding Frontotemporal Dementia (FTD) Differences from AD


Although Frontotemporal Dementia (FTD) is largely misunderstood, it is the most common form of dementia for people under age 60.

Originally known as Pick’s Disease and often referred to as such, FTD describes a clinical syndrome and a group of brain disorders associated with shrinking of the frontal and temporal anterior lobes of the brain.  Frontotemporal Dementia differs from Alzheimer’s Disease in two distinct categories:  1) drastic changes in behavior, which will be described below and 2) problem with language 3) genetic component and 4) age at onset.

Behaviors associated with FTD can be either impulsive or bored and listless, and often is associated with inappropriate social behavior.  Some of these may include lack of social filtering or tact; decreased empathy toward others; increased interest in sex;  unexplained agitation;  neglect for personal hygiene; compulsive and often bizarre behavior or sudden changes in food preferences.

Problems with language may include difficulty in forming words and sentences and understanding other’s speech.  Important to note is that spatial skills and memory remain intact, which is a major differentiator from Alzheimer’s disease.

Familial FTD occurs when multiple people in a family across back-to-back generations have FTD or a related condition. The multiple people are usually closely related to each other, like a grandparent, parent and adult child, and they all belong to one side of the family or the other, not both.  This is known as genetic FTD.  About 10% – 20% of all cases of FTD is considered genetic FTD.

FTD typically strikes at a younger age.  The majority of FTD cases occur between the ages of 45 and 64.  In contrast, the average age of diagnosis of Alzheimer’s Disease (AD) is 80.  The impact on work, family, and financial burdens are significantly greater with FTD than AD.

FTD is frequently misdiagnosed as AD, depression, Parkinson’s Disease or a psychiatric condition, making it far less known and understood by the medical community.  As of 2011, there were approximately 60,000 cases of FTD in the US, so it is far less common than AD.  It currently takes 3.6 years to obtain an accurate diagnosis of FTD due to the complexity of symptoms.

Caring for someone with FTD is extremely challenging.  Care partners must be diligent in finding health care professionals who will help in diagnosis, coordinating care.  Like AD caregivers, understanding the disease is paramount.  Learning patient advocacy will offer a tremendous benefit to both care partners in dealing with the day to day changes that often occur and working with the professional care team on medication management and care provisions.

Because it is difficult to diagnose, care partners should be prepared for multiple specialist visits.  Keeping a detailed journal of behaviors will aid in helping doctors look at all the symptoms that the person is exhibiting, not just what they observe in an office visit.

Keeping a healthcare notebook will be a tremendous asset in helping manage doctor visits, medications, and recording patterns of behavior.

Care partners should seek a support group early on, as FTD, like AD, is especially stressful on care partners.  The Association for Frontotemporal Degeneration(AFTD) is an excellent resource of information, publications, a listing of local support groups and more.  Their number is 866-507-7222 or http://www.theaftd.org.

Care partners need to be educated early on in understanding care services, such as In-home care, adult day and residential care.  Finding the right care for each stage of the disease will help families plan for next steps.

Today, there is no cure for FTD and there are no current treatments to slow or stop the progression, but a growing number of interventions – not limited to medications – can help manage FTD symptoms.  It is imperative that FTD be diagnosed and treated by a healthcare professional who has clinical practice with Frontotemporal Dementia.

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