Tag Archives: Dementia Live

Dementia Live, Senior Care Professionals, The Family Caregiver

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

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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.

Hospital Professionals, Senior Care Professionals

Careers in Aging – Proactive Approaches to the Looming Crisis

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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.

Family Caregiver, Hospital Professionals, Senior Care Professionals

Why State Dementia Training Requirements Are Expanding

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More than 5.5 million people across the United States are living with Alzheimer’s disease and other forms of dementia.  As the baby boom generation ages, the numbers are projected to grow at alarming rates.  Although state dementia training requirements vary greatly, overall requirements are expanding for certified nursing assistants, administrators, licensed practical nurses, health aides, personal care assistants and law enforcement and emergency personnel.

People living with dementia are living in a variety of settings – nursing homes, independent and assisted living communities, adult day centers and at home.  Professionals and families provide daily care, but beyond that, the community at large is touched by dementia.  Our police, firefighters, and emergency personnel come in contact with persons living with dementia.  Hospitals are treating more persons with dementia every day.  Social workers, too are helping a growing number of persons with dementia and their families.  Volunteers in a variety of settings are assisting persons with dementia and their families.  the need for dementia training is growing and state requirements are expanding to meeting the demands across the healthcare spectrum.

Until just a few years ago, state dementia training requirements were minimal, with the exception of a few states that were leading the charge, thanks to visionary leaders that saw the when those caring for persons with dementia had little or no training, the quality of care is greatly compromised.

Although states are deciphering best practices in dementia care, as we understand more about the needs of persons with dementia and how to best serve them and their families,  more defined training requirements and being implemented quickly.  Person-centered care practices, when integrated properly, can lead to a transformational change in the quality of care.  Quality dementia training leads to reduced care partner stress and equips caregivers with effective tools to better respond and meet the needs of persons living with dementia.

Improving state training requirements is incredibly important work as we prepare for the fast-growing numbers of people who will be entering long term care.   As we move forward, it is our hope that states are expanding training requirements for those who serve people in all settings, not just those facilities that market themselves as serving individuals living with dementia.  Adult day centers,  assisted living and independent living communities are all seeing a dramatic rise in serving persons with dementia.

When communities train all of their staff who interact with their residents, person-centered culture change is possible.  This includes dietary, housekeeping, maintenance, administrators and others.

And finally, states are looking at programs that are effective, feasible and lead to sustainable change.  This is not easy, as program implementation across large entities requires training providers who are adaptable, understand the needs of that organization, and are equipped to partner with organizations to effect positive change.

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® empathy training program and led the development of Compassionate Touch®, a clinically proven skilled touch program for those living with dementia and at end-of-life.  Pam may be contacted at pam@ageucate.com.

 

 

 

Compassionate Touch®, Family Caregiver, Hospital Professionals, Senior Care Professionals

Is Stress Reaction a form of Behavioral Expression in Dementia?

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Stress Reaction is a term being used more often to describe communication in persons living with dementia.  Behavioral expression, too, is communication.  In a growing number of circles, the term behavioral expression is being replaced by stress reaction simply because behaviors sometimes leans toward being a negative descriptive of how persons with dementia express unmet needs.

Stress reaction is communication that is caused by changes taking place in the brain caused by the progression of dementia.  These changes can cause behaviors such as:

  • Aggression
  • Irritability
  • Pacing or wandering
  • Withdrawing
  • Resistance to care
  • Crying
  • Yelling

It is important for care partners to understand that stress reaction is always caused by an unmet need.  The most common causes of unmet needs can be categorized in the following areas:

  1.  Physical discomfort – perhaps caused by pain, hunger, thirst, fatigue or other barriers.
  2. Nonsupportive environment – this might include noise, chaos, inadequate lighting, temperature changes or excessive clutter.
  3. Unmet social needs – boredom, lack of sense of purpose, lack of companionship, touch deprivation are some examples.
  4. Ineffective care partnering – examples include unrealistic expectations from caregivers, distrust from either care partner or inappropriate care (care that is not conducive to caring for persons with dementia)

Now that we’ve discussed stress reactions from persons living with dementia, we must then look at stress reactions from caregivers.  Understanding that it is how we as caregivers react to their stress reactions, is a core value of person-centered caring practices.

We cannot control their behavior, but we can control how we respond to their behavior.   Healthy care partnering means we understand that they cannot change what’s going on in their brain.  Their behaviors or stress reactions are a response to unmet needs, and it is the care partner’s responsibility to put the puzzle pieces together to help their care partners meet their unmet needs!

A few basic guidelines for care partners to keep in mind when there is a stress reaction:

Allow adequate space (in other words, step back if necessary)

The rule is always safety first for both care partners

Observe the environment, and what can quickly be changed, such as taking the person from a noisy room to a calm atmosphere

Observe body language and facial expressions, especially if the person is non-verbal.  What might they be trying to express?  And care partners, observe your own body language and expressions, as your stress reaction can either cause the situation to escalate or de-escalate

Watch your tone of voice!  It’s amazing how a calming voice will immediately bring calm to another person.  And just the opposite is true.  If stress reaction is met with similar behavior, it’s almost always a certainty that the outcome will not be positive.

And finally, learn techniques and tools that can prevent stress reactions.  Touch, music, redirection techniques, companion pets or dolls and more can have amazing outcomes and are simple to implement with the correct training.

Pam Brandon is the President/Founder of AGE-u-cate® Training Institute, creator of the Dementia Live® Sensitivity and Empathy Training program and directed the development of Compassionate Touch® for persons living with dementia and end-of-life.  She is a passionate advocate for older adults and those who care for them.