Category Archives: Faith Community

The Family Caregiving Tsunami is Here. How are We Supporting Them?

We have a family caregiving tsunami whose tidal waves are affecting every corner of our society.  I venture to say that most communities are not prepared for the domino effects of a fast-aging population let along to provide support to their families that are scrambling to stay above water – emotionally, physically and financially.

November is National Family Caregivers Month.  Spearheaded by the Caregiver Action Network, the theme is Caregiving Around the Clock.  

As I travel abroad, I certainly see first hand that the challenges in the US are felt around the globe as this age-wave takes hold.  Public institutions are already stretched to serve current needs and despite the growth of

Let’s look at a few staggering US statistics compiled by the Family Caregiver Alliance:

  • Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • Approximately 39.8 million caregivers provide care to adults (aged 18+) with a disability or illness or 16.6% of Americans. [Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.]
  • About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

What is the Economic Impact?  

  • The value of services provided by informal caregivers has steadily increased over the last decade, with an estimated economic value of $470 billion in 2013, up from $450 billion in 2009 and $375 billion in 2007. [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
  • At $470 billion in 2013, the value of unpaid caregiving exceeded the value of paid home care and total Medicaid spending in the same year and nearly matched the value of the sales of the world’s largest company, Wal-Mart ($477 billion). [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
  • The economic value of the care provided by unpaid caregivers of those with Alzheimer’s disease or other dementias was $217.7 billion in 2014. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

The clock never stops for family caregivers, and globally the clock is ticking for public and private institutions, community organizations, faith communities and each one of us in this space to make a committment-  that in 2019 we do more to reach family caregivers, provide support services and needed resources.  They are and will remain the largest group support our aging population in the years ahead.

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

“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.

 

Can we Age Well through the Challenges of Aging?

Until a miracle cure is found to stop, reverse or drastically slow down the aging process,  the news flash of the day is that we will all leave this earth someday.  In our anti-aging driven society of wrinkle reducers and body re-shaping, the fact is that all of us are, shall I say it – AGING!  The question is not that we are aging, but can we age well through the challenges of aging?

Unlike what many marketers would have us believe, aging is not a disease.  Normal aging is associated with changes, some of these being:

  • Vision – decreased depth perception and ability to distinguish dark colors.  Often this includes decreased night vision.
  • Hearing – loss is gradual;  in the 65 – 74 age group 25% hearing loss is average, with men experiencing more than women.
  • Smell – by age 80, 40% of older adults may experience changes in ability to smell.
  • Touch – the number of nerve receptors in skin decrease and difficulty in the ability to discriminate temperature increases with age.
  • Psychosocial – memory and reaction time typically being to decline at about the age of 70, leading to slower response time, decreased reflexes in the feet and learning time takes longer.

These age-related changes can be challenging, especially if we don’t accept these as a reality of normal aging.  For instance, vision changes require that we see our eye doctor on a regular basis so that symptoms such as cataracts can be corrected.  Hearing loss can be treated with hearing aids.

Other changes are more complex which can be related to a number of chronic illnesses, such as diabetes, medications, and dementia.  The “snowball” effect of age-related changes such as falling, depression, memory loss, loss of peripheral vision, weight loss, for example, is not a normal part of aging and needs to be addressed in order to age well.

To age well we:

  1. Must accept the normal changes taking place as we age
  2. Address these changes with regular health care visits
  3. Understand that an unhealthy lifestyle such as lack of physical exercise, unhealthy eating, over-consumption of alcohol, drug or medication misuse,  and lack of social interactions will have a domino effect on normal aging.

Age is the greatest factor in developing Alzheimer’s, Parkinson’s disease and other neurological symptoms, heart disease and other chronic illness.  For the 78 million boomers marching toward old age who want to age well, the best first step is to realize that you have the ability to choose if this will be your course of action.  To age well, we must take on the aging challenges intentionally.  Not by ignoring that we are aging, or allowing ourselves to wallow in the woes of aching joints.

“Know that you are a perfect age.  Each year is special and precious, for you shall only live it once.  Be comfortable with growing older.”                              ….Louise Hay

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 Simulation program.  She may be contacted at pam@ageucate.com

www.AGEucate.com

Personhood and it’s Value in Dementia Care

Quite simply, the definition of personhood is the quality or condition of being an individual person.  At the core of personhood is the self- who we are are, our values and beliefs.  It’s who makes us who we are.  Being able to recognize the “self” of personhood is key to understanding and practicing person-centered care for persons living with dementia.

Professor Thomas Kitwood was a pioneer in the philosophy of person-centered care from the University of Bradford in England and in the 1990s, connected the beliefs and values of person-centered care specifically to dementia care. His work and research gave voice and credence to the need to realign dementia care practices to a model oriented to the “personhood” of the individual living with dementia.  Although he passed away before his research was complete, his valuable work, and has been built upon throughout the world as the basis and model for providers of dementia care services, advocates and certainly the continued research on this topic.

Personhood doesn’t go away as dementia progresses.  The individual within is what makes up who we are.  In many ways, dementia does change one’s judgment, memory, sensory abilities, language, mood, and behaviors.  But what makes them who they are doesn’t change – it’s their personhood.  Unfortunately, too often our society, families and even professional caregivers treat someone living with dementia as if they have lost who they are.  When we ‘discount’ that person’s selfhood (or personhood), it alters how they think of themselves in the world, their relationships, security, and purpose.

Humans are born to relate, connect and bond.  These needs remain for a lifetime, yet far too often when someone has even mild dementia, others treat them as if those inner needs that keep them whole, are simply not important.  Sadly, those who are often the most vulnerable to this reaction are families.  The root cause of not respecting one’s personhood is often fear,  denial or the need to suddenly take control.  Losing one’s personhood robs them of the ability to hang on those basic human needs – to related, connect and bond.

Respecting one’s personhood in dementia care means that we must move into their world.  Join them where they are, in the moment, with no expectations other than to connect with the individual within.  When doing so, we are practicing person-centered care and their personhood.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and their caregivers.  Pam is the creator of the internationally acclaimed Dementia Live awareness and training program and worked with recognized expert, Ann Catlin in developing the Compassionate Touch program.