Connecting Through Technology

Social distancing does not have to feel like a jail sentence. But when you are feeling socially isolated and caring for a loved one with dementia, it can certainly feel like it.

How can we navigate the changes in both our lives and theirs? Perhaps your loved one enjoyed attending a group, a center, eating out or going to the gym with you. Perhaps you were able to flee the house for a few hours and do self-care things.  Now as we navigate COVID-19, we are called to adapt. Technology can be an asset.

If you are intimidated by technology, now is the time to use the good old-fashioned phone and call a friend, a neighbor, a son or daughter and ask for help. Not only will you gain from the connection to your helper, you will be challenging your brain to learn some new and useful tools.  

Did you know that every day since Coronavirus has spread, resources for connecting have increased? From the singing Italians who sang to one another from open windows during the first days of isolation, adaptation and creativity have been highlighted. Children’s book authors offering free YouTube drawing lessons, virtual tours, free concerts, carry-out and delivery from your favorite restaurants, are some of just a few resources that have blossomed.

Whether you have a tablet, a home computer, a smart phone, even a regular phone—there are ways to connect that will help brighten your days despite the new guidelines for isolation.

There is a short list of resource locations on this site’s landing page that might make days with your loved one a bit more pleasant. 

If your local support group or memory café is no longer meeting, join Dr. Cate on Zoom. At catemccarty.com you can join weekly support groups and a variety of memory cafes that include reminiscence, exercise and camaraderie. 

Many of your local professionals are offering virtual options. Support is a connection away. Do not let technology keep you away. Reach out to learn how to use it. Social distance technology might bring you closer than you have ever been before. 

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Springtime Light

As Spring gets closer, we see changes in light. Whether it is Daylight Savings Time and springing forward or a subtle change in trees budding—our world is moving toward more light. As our care partner’s brain changes, we must change to give care. That change can bring up feelings of resentment, anger, guilt, shame, loneliness and depression. Even as the natural world gets brighter, our path may feel full of shadows.

Spring light holds a lesson for caregivers.  A gardening resource explains that light comes in colors.1 In Spring, red light provides the energizing chlorophyll to make a plant green. From a red light comes growth.

This is true for plants, and is true for growth in dementia world. Change for your loved one has to start with a red light for you.

  • A red light to ignoring signs of brain change
  • A red light to neglecting self-care
  • A red light to putting the needs of your loved one before your own

We are the change agents. Our loved ones have a disease that makes change difficult or impossible. Like plants in Spring, we need to use the red light as a filter for our change.

Research shows that caregivers are resilient and have a higher sense of well-being with education, with seeking help and with spirituality.2

  • Go to educational events, read educational books
  • Ask for help either home care or placement
  • Discover what gives you inner peace and get daily doses

Our loved one is experiencing brain change that is altering their ability to process what they once could. You have become the light of their life—which requires you to seek self-care, knowledge and grace in order to thrive.

Footnotes

1http://www.cannagardening.com/influence_of_colors

2Bull M. J. (2014). Strategies for sustaining self used by family caregivers for older adults with dementia. Journal of holistic nursing : official journal of the American Holistic Nurses’ Association32(2), 127–135. https://doi.org/10.1177/0898010113509724

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Sweetheart Messages

In the season of conversation hearts, a candy that has long represented Valentine’s day, how can we express our love to individuals who are changing as quickly as their brain changes with dementia?

Dr. Gary Chapman’s Five Love Languages describes how individuals have a primary and secondary love language.1 The five love languages are:

  • Words of Affirmation
  • Quality Time
  • Receiving Gifts
  • Acts of Service
  • Physical Touch

As a caregiver you may be able to define your loved one’s primary love language by reflecting on the way they have expressed love in the past.

  • Did your mom give gifts more often than share words of affirmation?
  • Did your husband do more acts of service than schedule quality time?

Dementia changes may cloud all communication and as the changes confuse the individual, often complaints become the communication style. What they complain about most, may be their primary love language.

Words of affirmation and touch are my choice as the top two love languages for later stages of dementia. That being said, our words of affirmation and our touch have to change to match the brain change.

In my Creating a Thriving Environment2 training, one of the five care strategies I teach is Simplify.  We can simplify our message and approach to better communicate with our loved one whose brain is changing. So, the romantic limerick that once you rattled off to your husband who now understands approximately one out of every four words, needs to be shorter.

Think conversation hearts.

The essence of love, with a few short words.  You may or may not like the candy, but a sprinkling of the sentiments throughout your day would surely ease some insecurity.  The same is true for your loved one.

In my home I love you has become the connecting words my husband uses to affirm that I am present in his world, our home.  He shouts it from the other room, as a connection. My response for now, at this juncture, is I love you more. The connection is confirmed, I am in the house.  The same way he whips his head around when I switch sides as we walk together—a “where are you—oh there you are.”

Perhaps your mom, dad, friend is having word retrieval issues, a simple statement; I am listening stated with eye contact and patience communicates love.  Or I am here with a touch.

There are many changes as the brain shrinks quicker than normal aging.  As caregivers we are called to “distinguish between love as a feeling and love as an action.5 In my experience, the action can produce the feeling which makes the job of caregiving just a  little less overwhelming.

Footnotes

1Chapman, G. 2010. The Five Love Languages, Northfield Publishing.

2https://catemccarty.com/cate-list/

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Romancing Dementia

Living with dementia results in a lot of changes, particularly in terms of touch. Whether you are a wife, husband, daughter or friend—it becomes difficult to know how best to respond. The use of touch can be very effective.

The Functional Assessment Staging Tool is a tool widely used to assess where individuals are in the seven stages of dementia progression.2 This well validated tool shows that as a person’s brain degenerates, they move back in time to younger ages of emotional and cognitive processing. Concepts, skills and emotional connections that were normal as an adult start regressing into adolescent and eventually childhood responses.

This makes relationships with caregivers, whether professional, child or spouse, challenging. We need to adapt.

Cultural anthropologist Ashley Montagu links childhood develop and touch in his book Touching, the Human Significance of the Skin. If you have any spare time, this book has fascinating information. He describes the skin as the second most powerful organ for interpreting signals and communication—with the brain being the most powerful. Montagu clarifies that even as the skin changes with age, the fingers and hands have the greatest number of neuro-tactile elements.

As a spousal caregiver, I see the subtle changes in my husband. The romantic embrace is now more of a bear hug. I have adapted with more hand-holding, less expectation of romance and an increase in camaraderie through touch. The we are in this together needs to be expressed now more than ever, but the old strategies were no longer working.

I coach grieving adult children who are totally frustrated when they reach out to a parent with dementia to share an anecdote or reach out for comfort. The responses that were once there, are no longer. I coach caregivers to expand their network.

Who might offer the wisdom and solace that mom, dad or spouse once did?  Adaptation is the only way to thrive in this disease.

This journey is not easy, and certainly not one any of us would have chosen. But we do have many resources to help us along the path—provided we practice self-love and stay in touch with one another.

References

Chapman, G. 2010. The Five Love Languages, Northfield Publishing.

Montagu, A. 1986. Touching, the Human Significance of the Skin, Harper & Row.

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Hindsight & 2020

As we enter 2020, a year that came faster than most of us imagined possible, we can use it as a year to focus on perspective. As caregivers of loved ones with dementia, focus and perspective are often warring elements.  We focus on the changes we are witnessing and often lose sight of the bigger picture. Or get so focused on the long-range that we miss what is right in front of us.

When we revert to hind sight we may be able to reflect on early signs that our loved one’s brain was changing.  Perhaps it was an increased reliance on your assistance with short-term memory. Or maybe it was social inappropriateness. . . when you suddenly felt the awkward silence after a less than tactful statement. 

Research shows that disinhibition, inappropriate affect (facial expression) and lack of empathy are often the first clinical signs of neurodegenerative disease especially in Alzheimer’s disease and behavioral variant Frontotemporal Dementia (FTD).1 These clinical signs are apparent years before noticeable impairment on classical neuropsychological assessment and brain atrophy on imaging. Researchers describe lack of self-control, inability to recognize sarcasm and facial expressions—things we may remember well in hindsight.

Thus, began our own caregiver journey, with angst over social settings; with over-planning, over-compensating and reduced socialization. Caregiver burden and distress is heightened in behavioral variant FTD and Creutzfeldt-Jacob disease.2

How do we deal with caregiver burden and distress? Our ability to cope requires us to step back and rest our eyes. Perspective is gained through:

  • Support groups
  • Respite through in-home care; adult day care
  • Education from skilled dementia trainers
  • Relieve from doctors who understand dementia and focus on the unique symptoms of your loved one

There will come a time when our ability to focus and our perspective is clouded by distress.  At those times we may need more than in-home respite.  As we walk this journey, an alternate route should include a memory care community that specializes and understands the different hues and stages of dementia. Both you and your loved one are individuals dealing with your own individual set of changes and challenges.  Keep your eyes trained for those offering unique solutions and supports in the year of 2020.

Footnotes

1Desmarais, P., Lanctot, K. L., Masellis, M., Black, S. E., & Herrmann, N. (2018). Social inappropriateness in neurodegenerative disorders, International Psychogeriatrics, 30(2): 197-207.

2Uflacker, A., Edmondson, M. C., Onyike, C.U., & Appleby, B. S. (2016). Caregiver burden in atypical dementias: Comparing frontotemporal dementia, Creutzfeldt-Jakob disease, and Alzheimer’s disease, International Psychogeriatrics, 28(2): 269-273.

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Not a Creature was Stirring

Not a Creature Was Stirring

“Not a creature was stirring, not even a mouse . . . 1

As we settle into winter, exercise has become more of a challenge not only because of holiday activities and savory treats but also the shortened days and colder weather. Meanwhile our bodies struggle to adapt to all the extra food, the reduction in sunlight and endorphins.  But research is offering a solution: treadmill exercise.

A Japanese study looking at the effect of treadmill exercise on cognitive decline and white matter found that mice who used the treadmill for six weeks had decreased cognitive decline and increased white matter compared to the mice who were sedentary.2

If you are dealing with behavioral disturbances related to an Alzheimer’s diagnosis, consider the research findings on physical exercise mitigating behavioral impairments.3 Also a mouse study, this study looked at the role of voluntary physical activity with a level of endurance in lessening behaviors. Mice who did the voluntary physical activity had a decrease in behaviors. Could it be that walking while watching a favorite movie or listening to a preferred playlist provide the endurance for the treadmill? Although the research has started with mice, let’s not hold off on reaping the benefits.

Human subject research looking at exercise’s impact on our brains, shows equally encouraging results for individuals diagnosed with Mild Cognitive Impairment.4 This study looked at the combined impact of physical and cognitive exercise. Weekly 90-minute sessions for 40 weeks showed the group receiving combined cognitive and physical exercise improved or maintained their cognitive status compared to the control group that received a 90-minute health promotion class.

As we settle into our winter routines, let’s avoid playing the role of mouse in The Night Before Christmas but instead be modern mice—mice committed to improving our brains by walking, using the treadmill and strengthening cognition with audio books, podcasts, or favorite movies.

Footnotes

1Moore, C.C., The Random House Book of Poetry for Children (Random House Inc., 1983.

2 Ohtomo, R., Kinoshita, K., Ohtomo, G., Takase, H., Hamanaka, G. et al., (2019).  Treadmill exercise suppresses cognitive decline and increases white matter Oligodendrocyte precursor cells in a mouse model of prolonged cerebral hypoperfusion, Translational Stroke Research, Oct. 12. Doi:10.1007.                             

3Bernardo, T.C., Beleza, J.Rizo-Roca, D.Santos-Alves, E,. Leal, C., et al. (2019). Physical exercise mitigates behavioral impairments in a rat model of sporadic Alzheimer’s disease, Behavioral Brain Research, Nov. 13: 112358.

4Shimada H1Makizako H2Doi T2Park H3Tsutsumimoto K2, et al., (2018).  Effects of combined physical and cognitive exercises on cognition and mobility in patients with Mild Cognitive Impairment: A randomized clinical trial, Journal of American Medical Director’s Association, 19(7): 584-591.

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Light in the Darkness

Light in the Darkness

Regardless of faith, tradition, or background—winter’s darkness calls for increased light. If you have lived with dementia for any amount of time, you feel the darkness at a different level—wishing for light. A common behavioral manifestation for an individual with dementia is night-time wakefulness.  Usually accompanied by agitation, this behavior leaves dementia caregivers overtired and overwhelmed.

Research shows that season and weather significantly affect nocturnal rest for the individual with dementia.1 In this study, the researchers defined nocturnal rest as the five consecutive hours with the least motor activity during a 24-hour day.  Using this criterion, the study showed the most predictable variable of activity.  The findings were that day length and cloud amount were associated with night-time activity. Specifically, nursing home residents with dementia were more active at night on cloudy short days than on clear short days. The researchers concluded that adding extra internal lighting to the shorter and cloudier days could be an anecdote to the night-time wakefulness.2

Research has shown there is much more to the sleep-wake cycle of an individual with Alzheimer’s than weather and day length.  Circadian rhythm, the natural internal process regulating sleep-wake cycle, has been shown to have a bi-directional interaction. Sleep disruption actually influences the cognitive decline in Alzheimer’s disease as Alzheimer’s disease influences the individual’s circadian rhythm.3 The use of melatonin and bright light therapy are suggested as anecdotes to help the sleep-wake cycle.

For centuries, cultures far and wide have worked to increase light in the dark days of winter.  As you enter winter as a dementia caregiver, consider ways to brighten the darkness with bright light and décor reminiscent of the season. Embrace the warmth and light of the fireplace, the light of no-flame candles, and the treats that bring you light. They just might bring you sleep.

Footnotes

1Wahnschaffe, A.,  Nowozin, C., Rath, A.Floessner, T., et al. (2017). Night-time activity forecast by season and weather in a longitudinal design – natural light effects on three years’ rest-activity cycles in nursing home residents with dementia, International Psychogeriatrics, 29(12): 2071-2080.

2Mitolo, M., Tonon, C., La Morgia, C., Testa, C., Carelli, V., et al. (2018).  Effects of light treatment on sleep, cognition, mood, and behavior in Alzheimer’s Disease: A systematic review, Dementia & Geriatric Cognitive Disorders, 46(5-6): 371-384.

3 Saeed, Y., Abbott, S.M. (2017). Circadian disruption associated with Alzheimer’s Disease, Current Neurology & Neuroscience Report, 17(4): 29.

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Dementia Abundance

Those two words seem discordant at first glance. Once we have a diagnosis or at least medical recognition of memory changes, we have reality confirmed.  The signs we have been seeing are no longer in our imagination.  Reality stills any allusions you might have that your life will return to normal. Abundance you once had has turned to scarcity. 

As Thanksgiving approaches, the theme of gratitude is prevalent.  We think back to holidays past, and savor the memories but find it hard to feel grateful for the present.  Our loved ones may not be able to tolerate the traditions once held.  Our caregiving demands may be depleting our physical and spiritual strength.

Research has shown an increase in well-being by practicing gratitude, regardless of circumstances.1 It has been suggested that listing a few things you are grateful for can reduce depression and increase resilience.  Well-being and resilience are commodities well worth pursuing as a dementia caregiver.

Equally positive in research is reminiscence.  Even though dementia has changed your relationship with your loved one, reminiscing on sweet times can help lighten the scarcity today. Re-looking at photos or visualizing a time when you were happy together can add abundance to a day.

As you see cornucopias symbolizing abundance and a plentiful harvest, consider your care cornucopia. This is a symbolic basket  of your care strategies and tools. 

Is your care cornucopia full? 

  • Do you have family or friends who support you when you are frustrated or overwhelmed?
  • What ways are you able to get away to take care of your own self-care needs? 
  • Are there support groups or memory cafes that provide you and your loved one with safety and perspective?
  • Do you have a daily and weekly routine?

Perhaps you have these in place. If not, this would be a good season to add some strategy either through asking for help from family or friends or contracting with an agency or provider. 

Harvest baskets and cornucopias are not only full but diverse in color and texture. 

Is your care cornucopia colorful?

  • Does your weekly routine include some derivation of an activity that both you and your loved one have always enjoyed?
  • Are you getting daily physical exercise? 
  • Are you getting weekly socialization?
  • Do you have activities that give you a sense of purpose?

As we enter the harvest season, keep in mind that the farmer’s harvest season was one of preserving what is plentiful for the darker and colder days of winter.

 As we give care to individuals with progressive neurodegenerative disease, today’s harvest must last through darker colder days. But do not fret–your care cornucopia can be added to at any time—resources are abundant.

Whether it is a call to a friend, reading an Alzheimer’s-specific book, calling your local Arden Courts, accessing an online support network—you can increase your care harvest for both you and your loved one.

Footnotes

1Wood, A. M., Froh, J.J. & Geraghty, A. W. A. (2010).  Gratitude and well-being: A review, Clinical Psychology Review, 30: 890-905.

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Exercise as a Gift to Yourself

Exercise as a Gift to Yourself

As the days get shorter, you may find your desire to do physical exercise is decreasing as well. Folks have coined Oct 31-Jan 2 as the eating season. So we have less sunlight to encourage exercise, more intake of calories and an uptick on homemade coziness–a trifecta that is known to affect both mental and physical health. 

Why not look at exercise as a gift to yourself?  A gift that is given long before the gift-giving season, but that will make that season more enjoyable and you healthier.  Change is in the air, so perhaps you decide to try an online video that you have seen or a new class at the local community center.  It might be dancing, or tai chi or join the Silver Sneakers group. 

Research shows that those of us living with early dementia have perceived facilitators and barriers to exercise.1 This qualitative study revealed three themes that were barriers and influencers. The individual with early dementia reported low intrinsic motivation and an overall non-fit of resources to their needs and preferences. The care partner used poor physical/cognitive health and transportation as influential motivators. But motivation may be in short supply . . .

Caregivers— did you know that research is showing exercise as a great non-pharmacological intervention for improving global and specific cognitive function?  In a review of research conducted in nursing homes, it was found that exercise in combination with cognitive training and activities of daily living played a significant role in improving cognitive function.2 The research quantified the amount of exercise as 30 minutes a day.  Within 8 weeks of combined intervention.  Considering this is nursing home research, it is likely that those improvements were in folks who were in moderate to later stages.

Maybe 30 minutes seems like a long time.  Consider ways to up the amount of physical exercise by:

  • Parking the car further from the store
  • Taking the steps instead of the elevator
  • Walking the dog one more block or one more time
  • Dancing to a few songs on the radio

We may not be at the stage of life to take on a marathon training program, but we would benefit from upping our physical activity game. Always with a doctor weighing in on your choices. Once your physician agrees to your plan, start with a low number of minutes and slowly build up to what has been medically approved as an ideal goal.

Consider it as a gift to yourself and to your loved one—your brain and body will be grateful.

Footnotes

1Hobson, N., Dupuis, S.L., Giangregorio, L. M., & Middleton, L. E. (2019).  Perceived facilitators and barriers to exercise among older adults with Mild Cognitive Impairment and early dementia, Journal of Aging & Physical Activity, 24:1-11.

2Yorozuya, K., Kubo, Y., Tomiyama, N., Yamane, S., & Hanaoka, H. (2019). A systematic review of multimodal non-pharmacological interventions for cognitive function in older people with dementia in nursing homes, Dementia and Geriatric Cognitive Disorders, 21:1-16.

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Mushroom or Grape?

Many of you know me as the sunny good time, put-a-spin-on-it dementia gal. But trust me, I can be as overwhelmed with the diagnosis, or
vaguaries there of, as the next person. I benefit from showing up like the sun, even when I do not feel sunny. This journey is not for the weak.

I will be addressing the “Dark Side of Dementia” this Weds, Oct 23 at
Arden Courts of Seminole. This seminar will give you with real strategies that can help shine light on the fading of our husbands, our parents or
our friends.As a Gerontologist, I am unique in that I bring not only 40+
years of experience working with individuals with dementia and their
families, but because I have worked within the many systems our society has to support the journey. From companion, home health, nurse’s aide,
skilled nursing, assisted living, memory care, and adult day—I have a
breadth of knowledge and comfort that I can share with you.And then
there are the degrees–a Master’s in Death and Dying from Hood College, and a PhD in Aging Studies from USF.

Today I count my vineyard as full because of the opportunities provided
for me to share my knowledge through Arden Courts this Weds.I am
totally psyched about the Harvesting Memories workshop that will
provide caregivers with a fun and encouraging morning of creativity and engagement. I am happily creating the first CATE holiday engagement
book that is free to attendees.

All because of the generosity of our sponsors: Anderson McQueen, Assisting Hands, Prudential, Touching Hearts, Arden Courts, Fusion Health,
Griswold Homecare, and Care Patrol.Memory friends and family–our
vineyard of resources is full—but can only stay full with your
participation.

Please RSVP and attend the Shining Light seminar, the Harvesting
Memories workshop and our memory cafes—do not hide like a
mushroom in the dark—come out into the light so that we can share our
struggles as well as our joys.Even the bitterest of grapes can make a
palatable jelly.

So much sweeter than a mushroom grown in the dark.
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