Tag Archives: AGE-u-cate Training Institute

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.  

Careers in Aging – Proactive Approaches to the Looming Crisis

March 3 -7 is Careers in Aging Week and an appropriate time to talk about the importance of this topic.  No longer are the shortages of direct care staff and others in long term care a subject of the future.  The crisis is looming and it is serious.

The number of Americans 65 and older is projected to grow to 98 million by 2060, more than double the number we had in 2016.  According to the Population Reference Bureau, between 2020 – 2030, the number of older adults in America will grow by 18 million as the youngest baby boomers hit 65.

Like me, the baby boomers that are marching forward are asking ourselves, “Who will take care of me?”  While families have and will be forced to take on the caregiving tasks for their loved ones, it simply is not the answer or reality for many Americans.   Boomers and GenXers are working,  families are not geographically close enough to take on the role of primary caregivers, the numbers of widows and widowers are growing and many elderly are childless.

According to Government statisticians, home care is one of the nation’s fastest-growing occupations, with an additional million workers needed by 2026!  That is an increase of 50% from 2014.

Without pouring through any more statistics,  growing careers in aging is no longer an option – it must become a priority that starts with our government leaders and is embraced by stakeholders across the spectrum.  It is not a US-only challenge – it is a worldwide crisis that must be addressed sooner rather than later.

Work in long term care, especially direct care workforce has long been associated with low wages, often inconsistent work schedules, limited company benefits, and poor training.  The economic boom has pulled workers from long term care into retail, restaurants, hospitality and other similar businesses that are paying higher wages.  It’s been a catch-22 but the fact that the shortages are colliding with an unprecedented demand is especially frightening.

Without pouring through any more statistics,  growing careers in aging must be a priority that starts with our government leaders and is embraced by stakeholders across the spectrum.  It is not a US-only challenge – it is a worldwide crisis that must be addressed sooner rather than later.  Unfortunately, advocacy and lobbying take many years, of which we simply do not have time to wait.

What are the solutions?   There are not any easy ones, but perhaps looking at what we can do locally to turn the tide is going to result in positive outcomes.  We see our partner providers taking our Dementia Live® training to nursing schools, high school students and even out into communities who are embracing Age-Friendly and Dementia Friendly initiatives.  Raising awareness of the growing elderly population and their needs is huge.  Intergeneration programs among schools and churches and the elderly are setting an early example with children that respecting and taking care of our older adults is our duty.

Building awareness is a grass-roots effort and home-grown.  It means take creative efforts to work with others that include public entities, community-based organizations, political leaders and the private sector.  It means elevating the professional standards for those who choose careers in aging.   Careers in Aging is a field that is extremely rewarding.  We can do a better job of conveying this to our younger generation, and even an older generation who is looking to keep working and giving back.   What better way is there to give back than to serve others.

I’d like to hear what you are doing to bring awareness and educate others in your community!

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  You may reach out to Pam at pam@ageucate.com.

I Just WISH I Could UNDERSTAND what Mom is going through…

blackboard against red barn wood

Understanding someone with dementia is not easy.  What are they thinking?  How are they feeling?  Why are they acting the way they do?  These are fundamental questions that perplex professionals and quite simply leave families feeling confused, angry, guilty and helpless.

I have been a family caregiver and moved into the aging and dementia training space to help older adults and the growing numbers of families and professionals who are serving them.  Because I experienced for myself the helplessness that caregivers feel, I can relate well to family members who feel isolated, lost and desperately seeking answers.   Because I was a family member seeking help I know how little was out there 20 years ago.  Guess what?  There is still not enough support out there for families.  We’ve come a long way, but because the numbers of caregivers have swelled so quickly, this will remain a huge challenge in the years to come. Educating, supporting and providing resources for family members who are caring for aging adults, especially those who are living with dementia, is all of our jobs.

Short of a soapbox moment,  we need to get back to basics when it comes to dementia education.  We need to provide powerful, effective and feasible means to deliver education that will help professionals and families in understanding someone with dementia.  We must start with a foundational tool.

Our partner providers, those in elder care communities, home care, hospice, hospitals, community-based organizations, and others are consistently sharing with me their challenges – how to help families who are most often in crisis when they seek their services.   My discussions with leaders across the spectrum of care share a common theme.  Most, and I venture to say that is over 90% of families who are caring for someone with dementia, are in crisis when they transition to home care, an elder care community or reach out to a community-based agency for help. This is an alarming number of people who are exhausted, experiencing caregiver burnout –  physically, emotionally and spiritually, and dealing with overwhelming guilt, anger and hopelessness.

Back to basics in dementia education is greatly needed.  A tool that allows a family and professional to experience what their loved one is struggling with, and to then have someone to talk to that can walk them through the “why” of it all is enormously beneficial.  It’s experiential training at its core.  Stepping into their world for just a moment to allow caregivers to understand mom, or dad, husband, wife, resident or client is HUGE.

Quality education does not have to be complex.  In fact, simple, effective and feasible should be in the mind of everyone who leads education and training.  The next questions should be asked – is this providing a tool?  We need applicable tools that we can walk away with and immediately make changes in how we care for another person.  And these tools should not only improve the quality of life of the person we are caring for but reduce caregivers stress and make their jobs as care partners easier and more rewarding.

In short, we need strong foundational tools that are proven,  successful and work for everyone – from care providers, to their staff and to the families and residents/patients/clients they serve.

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® Simulation and Empowerment Experience being embraced by caregivers worldwide.