Traditions Re-Visited

From ghoulies and ghosties

And long-leggedy beasties

And things that go bump in the night,

Good Lord, deliver us!1

This traditional Scottish prayer can well be applied to October celebrations when living with dementia. With Halloween decorating a phenomenon that increases every year, it is important to consider the impact of Jack O’Lanterns, skeletons, mummies, witches and vampires.

First remember that these expressions of the holiday are more numerous and vivid than they were in your loved one’s early life. Halloween spending has grown over the years.2 With less Halloween energy in your loved one’s past, the reminiscence value from Halloween décor will be minimal.

Not only will these images not enhance living with dementia, they easily can add to environmental stress.  Whether it is a cobweb draped over a door or a talking witch, these decorations may in fact seem like real ghoulies and ghosties.  The brain changes that occur with Alzheimer’s and related dementias include changes in vision and perception. Hallucinations and delusions may leave your loved one unable to distinguish between fantasy and reality3.

Flashbulb memory of a particularly frightening time in life can also make what you see as a neutral holiday image quite troubling to your loved one. An example, clowns once seen as fun became frightening after a clown killer in Stephen King’s movie It.4 The memory of fear, horror, terror was associated with the face of a clown.

Flashbulb memories are detailed and vivid memories of an occasion that is retained for a lifetime.5,6 An image or a sound can send a person back to the feelings of the memory. Back to things that go bump in the night.

As you prepare to decorate for Halloween, it would be best to choose decorations that are less likely to frighten.  Rather than Jack O’Lanterns, why not pumpkins?  Rather than cobwebs and witches, why not cider and candy corn? Have a Halloween that is positively memorable.

Footnotes

1 http://www.pitt.edu/~dash/bump.html

2 https://www.thebalance.com/halloween-spending-statistics-facts-and-trends-3305716

3https://www.dementiacarecentral.com/caregiverinfo/hallucinations-and-delusions/

4 https://www.theguardian.com/stage/2015/jun/07/why-clowns-are-dying-out

5www.memorylossonline.com/glossary/flashbulbmemory.html

6El Haj, M., Gandolphe, M.C., Wawrziczny, E., & Antoine, P.  (2016).  Flashbulb memories of Paris attacks: Recall of these events and subjective reliving of these memories in a case with Alzheimer’s disease, Medicine (Baltimore), 95(46): e5448.

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Corn & Cross Pollination

I recently heard a speaker compare Redwood roots to caregiving.  Having been to San Francisco and seen California Redwoods, the comparison impacted me.  I have shared that speaker’s piece on social media.  But in reflection I wanted to share insight based on my first foray into truck gardening.  We were young parents, financially strapped, wanting to get our hands in the dirt.  So we got the landlord’s permission and began a small garden.  In that well-marked patch we planted all sorts of vegetables and one row of corn.  It was as others’ were harvesting their corn, that we realized something was amiss.  We had healthy stalks, but no corn.  In sharing this with our retired landlord, he told us about the birds and the bees.  We proceeded to have two more children, so his sharing was very helpful:).

But corn needs to be planted in a patch in order for the breeze, the bees, the whatever to cross-pollinate which results in corn on the cob.  One row will not be able to produce corn.

Caregiving for a loved one with dementia can be done alone.  But it cannot be done as productively, with as much joy, with as little stress as it can be done with others.  As I prepare for the  Maximizing Energy caregiver support group at Arden Courts, study after study after study shows—-social support, and social network and education are vital to a caregiver’s sense of mastery, self-efficacy, and mental health.

Yes, you can be the lone row of corn, you will make a nice shuck stack for Halloween . . . but you will be missing the corn on the cob with butter.

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Horton Hears a Who

A person’s a person, no matter how small!  This is Horton’s lament when he tries to get the jungle animals to realize that there is an entire civilization living on a clover.  This classic childhood philosophy book tugs the heartstrings of all professional caregivers and healthcare advocates.  We too are often trying to protect what is often misunderstood.  For Alzheimer’s advocates, Horton’s lament resonates with our own refrain, A person’s a person, no matter what stage!  We see the windows inside that most people fail to see or try to discover.

Horton came to mind this week as I heard of healthcare professionals refuting the need for hearing aids for individuals with dementia. Like Horton, I was shocked and disturbed that my very own tribe was missing the facts about hearing loss and Alzheimer’s. Like Horton, I knew the people in my personal Whoville need to be heard . . . and to hear.

Being Dr. Cate, I went to the research.  Most significantly, more and more research is showing an association between cognitive decline and hearing loss.  This association is being clarified with continued research, but suffice it to say, denying someone assistive devices because of cognitive decline is foolish.  That is a Horton-ism, not an academic result.  No study uses the adjective foolish.

But what the studies do say is that hearing impairment precedes cognitive decline, it is unclear if the hearing loss is an early marker of dementia or a modifiable risk factor.

Research shows that an individual with Alzheimer’s is experiencing brain decline that affects each of his senses.  We know that an individual in the early stages of Alzheimer’s is processing approximately only 1 out of every 4 words. So why would we deny him the ability to hear even the one out of four?

A person’s a person, no matter what stage!

As a Thanatologist, I know that the very last sense to die is auditory.  When the person appears to be vegetative, they can still hear.  As a recreation therapist and palliation provider, I used music to reach beyond the decline and touch the person.  Crossing over has been made gentle due to the impact of hearing.

I know that it is difficult to maintain hearing aids for the individual with dementia.  I too have been on massive laundry searches looking for the discarded item.  I also know that part of the discard is because the batteries are low.  Some form of physical discomfort prompted its removal.  I also know how difficult it is to have an individual with later stage dementia tested and fitted for the device.  Fortunately we have some audiologists willing to make house calls.

Horton heard a Who . . . can you allow the Who’s to hear Horton?

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Throwing the Baby Out with The Bath Water

A recent Swedish study looked at healthcare professionals end-of-life notes on the final days of individuals with dementia living in long-term care. The study found that the documentation of final days was heavy on the physical care and results and sparse on the psychosocial care.

Any academics reading will immediately discount the rest of this blog because the study was a) in Sweden; b) published in a journal with a lower impact factor and c) nursing home data only.  But those of us on the front lines for many years in both skilled nursing facilities and assisted livings see this study as confirmation of what we witness every day.

As I work with Dr. Cate, Dementia Coach clients, one of the family members’ primary concerns is not the physical care but the engagement of their loved one.  Individuals with dementia are in a process of brain change that has plateaus.  An individual in the earlier stages is usually engaged in good memory care but as the cognitive plateaus change, the engagement care declines.  As the brain becomes less able to handle large groups, these individuals no longer participate. If small groups are available, cognition may continue to affect participation.  These are the individuals who require one-on-one engagement that focuses on their individual preferences, biography, and stage.  But regardless of type of residence, this is where a gap in psychosocial care develops.   Dynamics that are responsible include training and staffing.

As a family member of a father with Alzheimer’s, I wanted Dad to have not just good medical care, but to have quality of life.  In his final days, our only regret was about his psychosocial health.

As both a family and professional caregiver of many years, Dr. Cate, Dementia Coach developed from my passion for psychosocial care.  It is that passion that has led me to develop the ME™ program for families and home health to increase both their quality of life and the quality of life of their loved one through training, example and consultation.

If you are interested in improving the quality of life of an individual in long-term care, please visit catemccarty.com or email catemccarty@gmail.com to start your consultation.

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Physical Fitness and the Caregiving Journey

Traditionally Spring is a time of fresh starts, cleaning, and new activities.  Fitness and nutrition become a focus with increased outdoor opportunities. But families caring for a loved one with dementia are often overwhelmed with day to day care.  Research shows that both Alzheimer’s caregivers and their loved one with dementia greatly benefit from twenty to thirty minutes of moderate intensity walking five times a week. Benefits of this simple plan include:

  • decreased caregiver stress, burden, depression
  • a slowing of Alzheimer’s disease in the early stages
  • improved overall quality of life

A similar study looked at behaviors of the individual with dementia. Moderate to intense exercise decreased neuropsychiatric behaviors. For caregivers dealing with difficult behaviors, this is a viable, non-pharmaceutical approach with great appeal.

If 20-30 minutes seems too much right now, consider a Japanese research initiative that found that 10 minutes a day of moderate to vigorous exercise resulted in 3.2% decrease in non-communicable diseases including dementia, musculoskeletal joint impairment and mortality.

If your loved one is dealing with balance issues, regular higher intensity functional exercise resulted in improved balance.  A combined aerobic and non-aerobic exercise approach resulted in improved cognition as well.

Kris, a family caregiver, found that a simple aerobics class at her local YWCA kept her husband with early onset dementia engaged.   The class welcomed him, he fulfilled most of the directions, and his humor in the class extended for the remaining morning.  Whether it is a simple class at the local YMCA, a program or a shared walk with others, regular exercise of any type is a positive for caregivers with or without their loved one.

Let Dr.  Cate strategize with you on ways to enhance your caregiving journey.  Her objectivity, experience and training can ease your journey.  Dr. Cate can help you navigate difficult behaviors, develop an engagement plan, and coordinate with family members.  She is committed to improving the whole memory care journey for caregiver and loved one; mind, body, spirit.

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Five Features of an Expert

What is the definition of expertise? When choosing assistance of any kind for your loved one you want to separate the experts from the novices. There are five key qualities of an expert:
• History of success
• Affiliation
• Longevity in practice coupled with contemporary research and innovation
• Appraisal and authenticity
As a dementia coach and memory care expert, Dr. Cate, Dementia Coach meets all five qualities of expertise.
When assessing the expertise of a consultant you want to ask if she/he has the stability of longevity in memory care as well as the flexibility of multiple roles.
• How much experience has the individual had in dementia?
• Is her perspective one of both family and professional experience or solely family?
• Has she been successful in her roles? Ask for references.
A professional who has worked with dementia in a variety of professional settings and has walked the journey as a family member has the best overall perspective. If a professional’s entire experience with dementia is as a family member, there will be a deficit in scope of diagnosis, and of the multitude of care choices and considerations.
Is this a professional who is keeping up with the latest research and innovations in care? The understanding of Alzheimer’s and related dementias is developing more each day. Textbook training and a family member experience will be insufficient.
A wise dementia coach will have her finger on the pulse of both general and specific dementia research. Every study clarifies an aspect of the diseases and the best practice of care. What was credible five years ago or sometimes as recently as last month, is notalways credible today.
Finally, expertise is defined by appraisal and authenticity.
Authenticity is defined as truthfulness of origins, commitments, intentions. Authenticity comes from sincerity, devotion . . . and expertise.
• Does the professional speak from the perspective of glass half empty or glass half full? Caregiving is overwhelming enough, you do not need a coach to join you in the despair.
• Does the professional sound, feel, sincere? Authentic? Does your gut say this is a good fit?
With decades of memory care experience in a variety of settings, family experience, and a foundation of academic research specific to aging and dementia—-Dr. Cate, Dementia Coach is the real deal.

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The “We’s” Have It

Whether you are introvert, extrovert, caregiver or care recipient one variable that proves powerful in health research is social support. As the national and international discussion swirls around the dangers of the “lone wolf” the value of spending time with select others is reiterated. In Alzheimer’s research this has been particularly emphasized.
Alzheimer’s caregivers who have social support report higher confidence in their caregiving and higher life satisfaction. Yet having been a family caregiver, I have experienced the drop-off of friends and family when I needed them the most. How do I gain or maintain social support in the face of Alzheimer’s?

 
The answer lies in two other powerful variables that have positively impacted Alzheimer’s caregivers. Seeking help and education. The study did not show the connection between these two factors. From personal experience, seeking help from family in denial was useless and demeaning.

 
Seeking help from those educated in Alzheimer’s and dementia resulted in a far better outcome.

 
This study has the advantage of being qualitative and personal. It will never make the academic standards. But the outcomes were profound. My sample was two parents, both diagnosed with Alzheimer’s. The first was diagnosed in the 90’s with each of us clueless on how to do more than keep him safe and dry. We did not seek help, mom had a DIY ethic, and a lot of denial. It did not end well.

 
The second parent, diagnosed in 2008 with family in minimal denial, and higher awareness of Alzheimer’s resources. We sought help, used our education, and had social support. Through our support group and our dementia specialists we navigated our parent’s final years with far greater finesse and peace. No DIY, but a chosen pack of educated social support. In the words of Robert Frost, it has made all the difference.

 
Let Dr. Cate, Dementia Coach be a part of your “we”. Offering family direction, referral as well as professional training and consult. For more info, catemccarty.com.

Posted in #dementiathrive, Alzheimer's Social Support, Caregiver, caregiver research, Psychosocial health, Specialist | Tagged , , | Leave a comment

Caregiving and Exercise

Traditionally January is a month of reflections on the old year and resolutions for the new. Fitness and nutrition are key elements of many resolutions. But families caring for a loved one with dementia are often overwhelmed, particularly after the holidays. Research shows that both Alzheimer’s caregivers and their loved one with dementia greatly benefit from twenty to thirty minutes of moderate intensity walking five times a week. Benefits of this simple plan include:
• decreased caregiver stress, burden, depression
• a slowing of Alzheimer’s disease in the early stages
• improved overall quality of life
A similar study looked at behaviors of the individual with dementia. Moderate to intense exercise decreased neuropsychiatric behaviors. For caregivers dealing with difficult behaviors, this is a viable, non-pharmaceutical approach with great appeal.
If 20-30 minutes seems too much right now, consider a Japanese research initiative that found that 10 minutes a day of moderate to vigorous exercise resulted in 3.2% decrease in non-communicable diseases including dementia, musculoskeletal joint impairment and mortality.
If your loved one is dealing with balance issues, regular higher intensity functional exercise resulted in improved balance. A combined aerobic and non-aerobic exercise approach resulted in improved cognition as well.
Sandy, a Dr. Cate, Dementia Coach client, found that a simple aerobics class at her local YWCA kept her husband with early onset dementia engaged. The class welcomed him, he fulfilled most of the directions, and his humor in the class extended for the remaining morning. Whether it is a simple class at the local YMCA, a program or a shared walk with others, regular exercise of any type is a positive for caregivers with or without their loved one.
If you are finding that caregiving is overtaking self-care, consider contacting Dr. Cate, Dementia Coach for objective well-informed listening and direction. With decades of dementia care experience, Cate has the resources, education and background to be your caregiving advocate.

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Anticipation & Presence

Having just returned from a whirlwind trip to Tampa, we are now preparing for a week in MD followed by two weeks in Spain.  Each trip is full of family and memory making presence.  Looking back I remember the same anticipation as a young family with selective purchasing, wrapping, preparing.  Today we purchase plane tickets, we pack, we prepare in different ways.  But the common ground is anticipation.  Presents for the family are now translated into presence with the family.  This season  is a wonderful gathering point, regardless of what holiday you are celebrating.  It is a time of decreased environmental light for many of our homes, but increased physical and spiritual light.

Last week I was honored to present to the Baycare Faith Community Nurses on Nurturing the Nurturer.  Taking my research to heart, we are adopting the lights and tress of others in our preparation to be away from our floating home for a while.  There are many beautiful tributes to the time of year.  I remind myself again to embrace the beauty of the best of the season and not get entangled in the wrappings and trappings.  Wishing you the best in this time of anticipation and presence.

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Further Neurology Diagnostics

My dementia spouse immersion program is proceeding with intensity and verve. After our first brush with a neurologist whose diagnosis of MCI reported on earlier this year; we decided to seek further information. With our home-base being in the Caribbean, we decided to stay medically near my grand-daughter. As a mecca of national think tanks and healthcare options, we proceeded to investigate. The royal “we”, a term we joke about as things progress. Meaning I do all the work while he interjects. The quality of interjection is for another post.
So about eight months ago I proceeded to contact several nationally known memory clinics. Two were rejected by my spouse due to cost. We settled on a memory clinic with excellent affiliations that accepted our insurance with an acceptable co-pay. They were proactive in getting referrals and the insurance claim number. Due to my husband’s refusal to leave our home (sailboat) during hurricane season, Dec. 18 was our date. It was a date that I built holiday plans around, solicited boat/cat sitters around, scheduled an outpatient surgery procedure around.
The first breakdown happened five months out, when the comprehensive caregiver questionnaire about symptoms and burden was lost by USPS, priority mail. Much phone time and investigation resulted in $50 + of consolation, no paperwork. Then the memory clinic sent a different set of paperwork, comprehensive but lacking the caregiver input . . . when queried, they assured me it was the same paperwork. So now, I, the caregiver have had to defend my memory to both the USPS and the memory clinic regarding their address, their paperwork. Keep in mind this is being done from the civility of Puerto Rico . . . far better than that of Haiti or Dominican Republic, but a world away from the civility of the states. So I filled out the paperwork, had a family member who works at the hospital deliver it.
Four months out begin trying to get an MRI report and disc to the memory clinic from a neurology visit in 2012. The neurology practice had archived that information, gave me the email address of the archiving company. We, my spouse loves the technology piece, emailed the medical release unique to this organization. We received confirmation that the report only was available and would be sent to the memory clinic. Two months later, no report had been received. Meanwhile Mike and I are scratching our brains to remember where the MRI had been done. Without the report we had no clue where it had been done.
It was in October, when I called the memory clinic to once again see if they had received the MRI report, only to be asked by a new receptionist where she would find this report. .. . I suggested my husband’s file . . . after being put on hold, she returned to say “we don’t do that no more.” Using my dementia skills, I centered, and proceeded to piece out what that meant. The primary dementia expert had left the clinic for one in another state. I asked when they were going to let future appointments know. After a hold, she had a neurologist speak with me and convince me that it would all workout for the best, or better. So I was placated. Then I received the questionnaire and appointment card . . . the same questionnaire that I had filled out the second go round.
The appointment was with an unknown PsyD. When I called i.e. the questionnaire, I was told it was a different one. Fortunately, I had a copy so I knew I was not yet a candidate for the memory assessment. That evening Mike and I decided to cancel the long awaited for appointment. The one that was going to answer all our fears, determine our living arrangements, and cure all that ailed us. Starting from scratch—stay tuned.

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