All posts by Pam Brandon

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.

Recognizing the Work of Long-Term Care Ombudsman

In recognition of National Volunteer’s month,  I’d like to honor the people who serve as long-term care ombudsman.  Many people do not realize the important role they play in keeping our elders safe by advocating for their rights.

The long-term care ombudsman program is mandated by state and federal law and funded by the Older Americans Act  (OAA) through the Executive Office of Elder Affairs.  Under this Act, every state is required to have an Ombudsman Program that addresses complaints and advocates for improvements in the long-term care system.

According to the Long-Term Care Ombudsman Resource Center (NORC), each state has an Office of the State Long-Term Care Ombudsman (Office), headed by a full-time State Long-Term Care Ombudsman (Ombudsman) who directs the program statewide. Across the nation, staff and thousands of volunteers are designated by State Ombudsmen as representatives to directly serve residents.

What is the Responsibility of the Long-Term Care Ombudsman? 

The Ombudsman program advocates for residents of nursing homes, board and care homes, assisted living facilities, and other similar adult care facilities. State Ombudsmen and their designated representatives work to resolve problems individual residents face and effect change at the local, state, and national levels to improve quality of care. In addition to identifying, investigating, and resolving complaints, Ombudsman program responsibilities include:

  • Educating residents, their family and facility staff about residents’ rights, good care practices, and similar long-term services and support resources;
  • Ensuring residents have regular and timely access to ombudsman services;
  • Providing technical support for the development of resident and family councils;
  • Advocating for changes to improve residents’ quality of life and care;
  • Providing information to the public regarding long-term care facilities and services, residents’
  • rights, and legislative and policy issues;
  • Representing resident interests before governmental agencies; and
  • Seeking legal, administrative and other remedies to protect residents.

We are honored to train many long-term care ombudsman on our programs.  Their dedication and passion to help older adults are admirable.  As our aging population swells, more people will reside in care facilities and the need for more ombudsman is growing.  We encourage others to consider volunteering for this organization.  You may contact your local Area Agency on Aging or the Long-Term Care Ombudsman Center to learn more.

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

Honoring a Loved One with Trees for Change

In celebration of Earth Day, I want to share an organization that I recently became acquainted with that is supporting the efforts of saving our National Forests.  Trees for Change is a wonderful option for honoring a loved one or pet.

According to Trees for Change, the U.S. National Forests cover 8.5 percent of the United States, providing roughly 190 million acres of woodlands that serve as the home to many species of animals. These lands belong to all of us and are meant to help preserve the environment for future generations.

Sometimes, areas of U.S. National Forests need our help. When wildfires rip through them, wildlife becomes displaced, and the forests are badly scorched. Replanting trees can help to regrow these areas in order to ensure that they can one day become homes for wildlife again and places where families can explore and discover the beauty of nature.

Trees for a Change is a service that lets you do good while giving gifts to people who matter in your life. We make it possible for you to pay to have a tree or a grove of trees planted in honor of a loved one, friend, customer or employee or in memory of a deceased person or pet. Their tree gifts cost less than the average bouquet of flowers, and they make a big difference for U.S. National Forest lands.

Here’s how it works:

  • You purchase the tree gift of your choice using their secure online checkout system.
  • They send out the gift to you or the recipient of your present.
  • A tree or a group of trees is planted in an area of a U.S. Forest that’s been damaged by fire.
  • Information about where the tree is located and photos of it are posted online.
  • The recipient of your gift can go online and learn about the tree. They can even use a map to find it and plan a trip to visit it!

In the age of simplicity, I think Trees for Change is a meaningful gift for both receiver and giver.  I certainly know I’ll be supporting this great mission with a tree to honor loved ones in my life.

Happy Earth Day!

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

 

 

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.