Category Archives: The Family Caregiver

Rural Healthcare: Helping Caregivers and Persons Living with Dementia

Access to quality rural healthcare, resources, education, and support is a growing challenge in the US and around the globe.  What does this mean for the growing numbers of persons living with dementia and their families who are caring for them?  How does this affect the quality of care being offered by nursing homes and other care providers?

There are no easy solutions as options are dwindling for many rural communities.  Closures of hospitals mean less health care professionals to diagnose Alzheimer’s and other forms of dementia.  Community education for families, often a service offered by hospitals and clinics, is then not available.  When the infrastructure of healthcare, private providers and community-based services is compromised, access to much-needed support dwindles quickly.

I recently had the honor to work with the University of Waterloo School of Pharmacy who collaborates with the Gateway Centre of Excellence in Rural Health, both in Ontario Canada.  The University will be training its pharmacy students using our Dementia Live® and Compassionate Touch® programs and beyond that, they are will be working with Gateway to reach rural communities with desperately needed dementia education and training for families and professionals.

Reaching the indigenous people of the province will be part of this project.  In the 2016 census, the indigenous or Aboriginal peoples in Canada totaled 1,673,785 people or 4.9% of the national population.   Many of the indigenous peoples live in rural areas where access to services is limited.   Bringing dementia awareness and education to rural areas will help to spur collaboration amongst various organizations who need to work together to serve their aging populations and families.

Limited access to rural healthcare is a growing initiative in the US and other countries as the aging population swells.  Because family caregivers make up the vast majority of those caring for persons with dementia, providing quality training, support and access to resources is a top initiative for healthcare, long term care services providers and community-based organizations in urban areas who can collaborate with local services, faith communities and others who have a direct reach to many of the families who are struggling.

Finding local champions who see the value of collaboration, education and support services is ultimately the best measure of success, as the communities themselves embrace the challenges and solutions for their aging communities and the unique needs of persons living with dementia and their families.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  

 

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