Category Archives: The Family Caregiver

What is Huntington’s Disease and Understanding it’s link to Alzheimer’s

May is Huntington’s Disease (HD) Awareness Month, sponsored by the Huntington’s Disease Society of America.   This often unknown and misunderstood disease and it’s link to Alzheimer’s  symptoms is worthy of discussion.   Let’s delve into understanding Huntington’s Disease.

According to the Huntington’s Disease Society of America,  HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.  It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.  HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.  Today, there are approximately 30,000 symptomatic American and more than 200,000 at-risk of inheriting the disease.

Symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s-simultaneously.  Symptoms usually appear between the ages of 30 to 50 and worsen over a 10 to 25-year period.  Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications.  Everyone has the gene that causes HD, but only those that inherit the expansion of the gene will develop HD and perhaps pass it on to each of their children.  Every person who inherits the expanded HD gene will eventually develop the disease.  Over time, HD affects the individual’s ability to reason, walk and speak.

HD Symptom’s include:

  • Personality changes, mood swings and depression
  • Forgetfulness and impaired judgment
  • Unsteady gait and involuntary movements
  • Slurred speech, difficulty in swallowing and weight loss

The symptomatic links to Alzheimer’s disease or other forms of dementia include personality changes, mood swings, depression, forgetfulness, and impaired judgment.  The complex symptoms of HD are manifested in the changes of motor, cognitive and psychiatric symptoms.   These symptoms begin insidiously and progress over many years, until the death of the individual.  The average length of survival after clinical diagnosis is typically 10 -20 years, but some people have lived thirty or forty years with the disease.  Late stage HD can last up to a decade or more.

Caregivers of persons with Huntington’s Disease need education, support, and resources.  State organizations of the Huntington’s Disease of America provide a means for caregivers and persons living with HD to come together.  I’ve been honored to speak at several of the Texas conferences and I will tell you that learning about this disease and the challenges they face has enlightened me to the fact that awareness of this disease is greatly needed by society.  I encourage our readers to join the HDSA social media campaign #LetsTalkAboutHD.

Like Alzheimer’s, families of persons with HD need tools to cope, a great understanding of their challenges, and a greater sense of empathy.

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 Dementia Live® sensitivity awareness program to help caregivers and the community understand what it’s like to live with cognitive challenges.

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.