Just Right

Mike and I just returned from our weekend road trip, this time to purchase a cricket chair. We drove into the foothills of PA to a place called Duncannon, to exchange a few dollars for my soon to be just-right-for-anything chair. As a now five foot tall person, most chairs require lots of pillows, footrests and overall short use. But the cricket chair is just right. Just right memories of childhood, just right fit. Just Right.

In our Maximizing Energy support groups, we have been discussing how to be good care partners, and we have come to the conclusion that much of the decision is based on our biography, our long-held preferences and our experience. There really is no one-size-fits-all. But as care partners, we attend webinars, seminars and support gatherings with an eye to what is just right for us.

Like my cricket chair, it might take some time, some effort and even discomfort to get to what is just right for you—but the result is remarkable.

Thank you for signing up for the journey–no one chose to live with dementia, but we surely can choose to do it with all the grace we can muster, together.

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The Culture of Memory Care

This may not seem to be the time to talk about culture when so much of what we see as culture has migrated to virtual access. But the pandemic has given us a lens to access cultures we may have previously ignored.

So, what exactly is culture?

One definition defines it as the customs, arts, social institutions, and achievements of a particular nation, people, or other social group.1 Memory care is a particular people and social group whose customs, arts and achievements have proven to be successful for individuals with dementia. Research validates this when the constructs and care of the memory community are research-based and consistently maintained. Purpose-built dementia-friendly design with specific staffing, training and engagement provide individuals with dementia the opportunity to thrive in an enriched culture.2

Expanding on the idea of memory care as culture, the art, music, celebration, routine and consistency of focus are foundations of a quality memory care community.

This has been vividly apparent through the pandemic.  While individuals living with dementia in other care settings have been significantly isolated, those in memory care have shown a continued quality of life as evidenced from family testimonial, and virtual confirmation. While they are not receiving visits, they are continuing to have the support of staff, the engagement of conversation and smaller groups and the daily enriched routine that those in other settings have been denied. Zoom, Skype, FaceTime and window visits have added reassured families that their loved ones are doing well.  Virtual visits have served as a health safeguard and a family reassurance.

Family satisfaction is a measure of culture change in long-term care.3 Happier families represent enriched culture. Families whose loved ones reside at memory care communities are reporting higher levels of satisfaction than those who have placed in other settings and even at home.  The difference lies in the very qualities of good memory care: superior dementia-specific training, extra and consistent staffing; home-like environment and dementia-specific activities.

Have the lives of those in memory care communities been affected by COVID-19? Absolutely. But the effect has been far less traumatic according to families, and the individuals themselves. 

The pandemic is serving as a filter for care partners to screen what they value and what is most important for their care partner no matter the crisis.

Footnotes

1Wikipedia

2 Abbott, K.M., Sefcik, J.S., & Van Haitsma, K. (2017). Measuring social integration among residents in a dementia special care unit versus traditional nursing home: A pilot study, Dementia (London), 16(3): 388-403.

3Latarsha, C., Zhang, N., Hyer, K., Pradhan, R.,  Unruh, L., et al. 2018. Culture change in nursing homes: What is the role of nursing home resources?, Inquiry, 55: 0046958018787043.

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Striving for IDEAL via Support Groups

Being a care partner to an individual with dementia is hard. Each stage has new challenges, and adapting to them is demanding. So, when I read the newest research on living well with dementia, my initial knee-jerk response was “great—it is all back to us—the care partner.” But the truth is, at this point in dementia care, we are the only change agents.

 Improving the Dementia Experience and Enhancing Active Life, better none as the IDEAL study, is a longitudinal study looking at ‘living well’ with dementia that is being conducted in the UK that started in 2014 and will continue through 2022.1 Quality of life, life satisfaction and sense of well-being were measured for both care partners. Findings show an association between the caregiver’s level of:

  • stress
    • well-being
  • social restrictions
  • caregiving competence
    • satisfaction with life

and the individual with dementia’s quality of life, satisfaction with life and well-being.2 They have determined these five major caregiving factors that influence “living well” with dementia for both partners.

As a caregiver, I have found that my satisfaction with life, well-being and competence are improved when I attend my favorite support[C1]  groups. My perspective is broadened, I see the continuum of need and care, and I find peer support—now more than ever. Note I said favorite, because support groups are like apples, there are many varieties. Virtual support allows you to sample a lot of different groups. I leave my favorite groups with a sense of well-being and hope.

The value of support groups has been affirmed in multiple studies. Meta-analysis showed their role in providing caregivers with the emotional benefits of peer support in facing challenges of caregiving and projecting future plans.3 Support groups are one ingredient to “living well with dementia.”

Take another look at the list of variables for living well—lower stress, less social restriction, higher competence—all of these are self-care items that we as caregivers need for well-being and life satisfaction that then spills over onto our care partner’s life. Yes, the onus is on us, but if we enlist help and seek support, we both win.

Footnotes

1Quinn. C., Nelis ,S.M., Martyr, A., Morris, R.G., Victor, C., Clare, L., 2019. Caregiver influences on ‘living well’ for people with dementia: Findings from the IDEAL study, Aging Mental Health, 1-9. doi:10.1080/13607863.2019.1602590

2http://www.idealproject.org.uk/

3Lauritzen, J., Pedersen, P.U., Sørensen, E.E., Bjerrum, M.B., 2015. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a systematic review. Joanna Briggs Institute Database Systematic Reviews and Implementation Reports,13(6):373-433.

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Kaleidoscope of Time

Years ago, one of my school-aged children explained the shifting cognition of Granddad as a kaleidoscope. My nine-year-old said,

You know mom being with Granddad is a lot like looking through the kaleidoscope. Most of the time you look in and can’t figure it out, but every once a while the light shoots straight through and then it is beautiful. So, I keep looking because you never know.

I thought it was an excellent analogy of the shift in cognition we encountered with Granddad. Sometimes he was just as we remembered, aware and on target with his speech but then things shifted and he was speaking from another space or place.

Research has validated Alzheimer’s disease and related dementias as neurodegenerative processes that take a person back in time—in a stage-like progression.1 The individual living with dementia is losing processing abilities in the order in which he/she gained them in cognitive development.

But here’s the rub—no one individual is solely in one stage, all the time—they slip back and forth. Sometimes they appear as fully cognizant and others as in cognitive decline.

An example came recently when a daughter asked,

Should I correct my mother when she forgets I am her daughter but calls me her best friend? Because sometimes I am her daughter. I never know when she is fully there.

This vacillation has been termed time travel.2 This newer conceptualization expands the linear staging to capture the fluctuations we see in the regression of our care partners’ cognitive, emotional, physical, social and functional abilities. Neurodegeneration continues to progress but in a multi-dimensional way—a bit like the dimensions of a kaleidoscope.

  There will be moments when the spouse you remember can remember just how to do a task, and others when he no longer does. One moment you are the daughter, the next she doesn’t remember your name. Sometimes she is the same empathetic friend you knew, others—she is self-focused and unable to listen to your feelings.

For many of us, the variability makes this journey more painful. We would prefer a straight and defined path. Particularly in early stages when it is easy to slip back into denial; then wham—dementia is looking you square in the face. In good times, a care partner can treasure the moments of lucidity and function. Those same moments can make a care partner question their decision to get help and question the diagnosis.

As care partners, we too may need to time travel—back to the days of good times. Memorializing the photos of our past, and taking note of the light shining through when it does. We keep looking because you never know when the light will shine straight through.

Footnotes

1Reisberg B, Ferris S, Franssen E: Functional degenerative stages in dementia of the Alzheimer’s type appear to reverse normal human development. Biological Psychiatry. 1986; 1319-1321.

2Christopher J. Johnson, PhD Roxanna H. Johnson, MS, CTRS, American Journal of Alzheimer’s Disease 87 Volume 15, Number 2, March/April 2000, 87-93.

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Where Have All the Flowers Gone. . . Long Time Passing

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This song comes to mind as I scan my past memory café themes, and have flashes of shared moments of joy, of memory and of amazing souls who have transitioned out of life with dementia.

  • Making strawberry jam at Park Station with my blue-eyed wonder Jane
  • Prompting a sweet smile from Gail
  • Receiving a wink from Jim and a laugh
  • Bonding over MD crab memories with Dick
  • Basking in the gentlemanly favor of Archie
  • Enjoying the assistance of David, always willing, always agile
  • Enjoying Tom’s flirtatious interpretations and observations
  • Marveling at Sid’s pleasant and polite insistence
  • Listening intently to David’s stories ripe with detail and joy 
  • Sharing baseball memories and history facts with Bruce

Each of these individuals added color and joy to our memory café family. They were flowers whose blooms were remarkable even late into the winter of dementia. What an honor to have spent time in their glow; realizing that I was basking in the prime of their day.  

Through the generosity of wonderful sponsors, I have been blessed with the task of watering them with the best in Memory Engagement, giving their care partners a chance to relax, as well as recognizing each care partner for their steadfastness.

Arden Courts and Dr. Cate re-ignited Memory Café of Tampa Bay four years ago. Many of our early attendees are no longer with us. Some are living in specialized care; others have passed away. Even as new folks join us, we remember with nostalgia all the sweet moments shared and acknowledge the profound commitment of their spouses and care partners.

Dr. Cate will always be a gardener of dementia world, watering and tending to prompt the blossoms. Now we are doing the gardening via Zoom, but we maintain the prime of day time, the best in Memory Engagement to continue to reap the colorful memories despite the season—all sponsored by premier sponsors.

Where have all the flowers gone? Dementia has picked them everyone. When will the research cure?

Until they do, we garden—carrying water, hoeing weeds and nurturing blooms.  Join us every Mon., Weds., & Fri. 11:00 am at catemccarty.com/calendar.

Dedicated to all the individuals who are no longer with us.

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Of Mice & Men

As we move into a new world with outdoor exercise, masks, and less of our got-to exercises, research is giving us new validation on the value of exercise. Research does not always distinguish a dementia type in a study which allows us to generalize to our lives with dementia. In the case of exercise’s impact on dementia, there really are no down sides whether aerobic and or strength training.

Exercise’s impact on dementia is a continually growing field of research with a recent study looking specifically at Parkinson’s Disease and long-term voluntary exercise.1 This eight week study used mice as the subjects. The control group had no running wheel in their cage, the study group had a running wheel. Findings showed that the mice who voluntarily exercised daily had reduced significant motor deficits. The results showed that voluntary exercise not only reduced motor decline but provided a level of neuroprotection— immediate and longer-term benefits. We could simply sit in our recliner and wait for this study to be validated in humans, or take it as a no-lose reason to exercise, even without our own running wheel😊.

A second mouse study revealed similar outcomes for mice with Alzheimer’s (AD).2 In this study, wild-type mice with AD were housed with intermittent or unlimited access to the running wheel. Regardless of intermittent or continuous access, the exercise resulted in improved brain function (neurogenesis) for both sets of mice.  

As older adults, a high-risk group for COVID-19, our exercise routine may well have been changed or missing. The second study clarifies that, in the case of mice, even intermittent exercise was brain positive. Perhaps you and your care partner go to the mall to walk, that might still be doable with appropriate precautions; or perhaps you switch to walking in your neighborhood or even at home with a digital program for walk or movement.

Now that summer has returned, swimming or water exercise looks like a safe option. According to the CDC “there is no evidence that COVID-19 can spread to people through the water used in pools, hot tubs, or water playgrounds. Proper operation and disinfection of pools, hot tubs and water playgrounds should kill the virus that causes COVID 19.”3

Whatever exercise you choose to do at this time, the CDC cautions people to limit close contact with people outside their homes in public spaces, both in and out of the water. Take a page from the mouse research, add some exercise back into your routine, it will improve your brain and your spirits.

Footnotes

1Wan-Ling, T., Hsin-Yung, C., Ying-Zu, H., Yuan-Hao, C., Chi-Wei, K., et al., 2019. Long-term voluntary physical exercise exerts neuroprotective effects and motor disturbance alleviation in a rat model of Parkinson’s Disease, Behavioral Neurology, doi: 10.1155/2019/4829572. eCollection 2019.

2Ginsberding, A-L., Zampar, S., Stazi, M., Liebetanz, D., & Wirths. O. 2019.

Pysical activity ameliorates impaired hippocampal neurogenesis in the Tg4-42 mouse model of Alzheimer’s Disease, 11:1759091419892692,  doi: 10.1177/1759091419892692.


3https://www.cdc.gov/healthywater/swimming/index.shtml

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Brain Connections via Digital Connection

As the CDC continues to promote that older adults are safer at home, those of us caring for an individual with dementia may be finding our routines are suffering from lack of cognitive and social connections. Research specific to dementia care partners is still sparse, but anecdotally we are hearing care partners expressing sadness, anxiety and depression resulting from isolation.

Those who had routines that included live memory cafes, social gatherings and even adult day attendance are struggling with the prolonged isolation that has resulted from staying at home as protection from COVID-19. Almost three months in, some of us have found outlet in digital connection, others of us have continued to struggle. Meanwhile those of us in the profession are seeing increases in caregiver stress, dementia behaviors and overall cognitive decline. Where to turn?

Digital connections continue to prove very positive for caregivers of older adults in general.1 In a study reviewing digital mental health tools, three categories were found to be most available:

  • Building skills
  • Educating caregivers
  • Assisting with caregiving duties

All three proved to be positive for overall caregiver health, but the majority were focused on younger caregivers. Resources for older caregivers and those caring for an individual with dementia were less numerous, but contributed to a reduction in caregiver burden and an increase in dementia education.

Both the Alzheimer’s Association and Arden Courts have been forerunners in adapting dementia caregiver support and education since COVID-19 precautions began. From dementia training, to educational webinars, support groups and even memory cafes—there are digital options for you to boost your safer at home routine. For those who are caring at home for a loved one, virtual memory cafes are a great way to connect socially with others on the journey as well as engage in creative and engaging projects together. These range from songfests to education to reminiscence.

Research looking at digital reminiscence apps revealed some interesting results. It was found that care partners were more likely to reminisce after generic music and photos than they were after personal music and photos.2 Meanwhile care partners were more likely to reminisce later in the day than earlier. As in all research, there is much more to be investigated, but it confirms the value of digital reminiscence and generic music and photos.

If you are struggling with digital technology, consider asking a younger family member or friend to coach you through the steps. Younger generations have had much more exposure to digital technology and can be helpful tutors.

Tablets, smart television and digital connections are proving to be our best defense against brain stagnation and social isolation. For enticing digital programs and support access the Alzheimer’s Association at alz.org or arden-courts.com. 

Footnotes

1Petrovic, M. & Gaggioli, A. 2020. Digital mental health tools for caregivers of older adults-a scoping review, Frontiers of Public Health, 28; 8:128.

2 Potts, C., Bond, R., Assumpta, R., Mulvenna, M., McCauley, C. et al. 2020. Evaluating the use of Ecological Momentary Assessment within a digital health intervention for reminiscence: How do people living with dementia and their carers engage? Journal of Internet Medical Research Mhealth Uhealth, May 14, doi: 10.2196/17120. Online ahead of print.

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Dementia Comfort & COVID-19

As a dementia care partner, the global pandemic has created a new set of concerns and stressors.  Referencing the latest research may help guide you as you navigate the new care landscape. Alzheimer’s Disease International1has offered clear and concise guidance on day-to-day approaches in this graphic:

These practical tips are helpful, and yet as we continue to practice Safer-at-Home, care partners may be finding their mental health at risk. ADI suggests that we need not only physical protection but also mental and psychosocial. In an overview of China’s efforts in addressing COVID-19’s impact on dementia care, the need for psychological first aid is stated2. Being the first nation to get to a zero rate of new cases, their efforts in dementia care are noteworthy for those of us still in rising numbers.

Although COVID-19 is not necessarily impacting people with dementia cognitively, if testing negative, it’s impact emotionally and behaviorally is significant. The disruption of routine, the increased media focus are impacting both care partners’ psychological health3. Care partners are reporting sleep disruption and increased anxiety. The Chinese research found that persons with dementia often have an irrational analysis of the epidemic. Anecdotally, caregivers report that they have used the media to try to convince their loved one of a more rational analysis. This strategy is not working. Researchers strongly advise limiting media feedback as one step in managing irrational behaviors and responses. 

Key strategies promoted in research include accessing additional mental and psychosocial mental health from dementia care professionals, mental health resources and community volunteers.2 This can be done via internet or telephone.  Whether consulting your insurer, your local Alzheimer’s Association, ADI or numerous on-line webinars and virtual groups—this is the time to increase time spent on mental health. Consider calling your doctor or memory disorders clinic and asking for telehealth options. Accessing family or professional help to have respite might be a consideration as long as COVID-19 screening precautions are taken.

In-home resources suggested to mitigate anxiety include relaxation and mindfulness instruction. Dr. Wang listed partaking of free online courses in subjects like music, arts, cooking as positive interventions to help dementia care partners enhance their daily routine while isolated.2

The second stream of current COVID-19 research relates to our nutritional approach. Published in Brain Behavior and Immunity, Western Diet and its high fat, high sugar components is discussed because obesity has been shown to be a risk factor. The promising news is that consuming healthy foods has a rapid anti-inflammatory effect, even in the presence of obesity pathology.The researchers suggest that we “refrain from eating foods high in saturated fats and sugar and instead consume high amounts of fiber, whole grains, unsaturated fats, and antioxidants to boost our immune function.”4

For many of us the need for emotional and psychosocial support during this time of isolation is supplanted with an increase in fats and sugar. Perhaps it would work best to access increasing our mental health support first, and then shifting our dietary focus.

The bottom line for dementia caregivers in the age of COVID-19 is that our emotional health is as vital as our physical health. Get online, pick up your phone, access support.

Footnotes

1Alzheimer’s Disease International ADI offers advice and support during COVID-19. March 17, 2020. https://www.alz.co.uk/news/adi-offers-advice-and-support-during-covid-19

2Wang, H., Li, T., Barbarino, P., Gauthier, S., Brodaty, H., et al., 2020. Dementia Care During Covid, Lancet, 395(10231): 1190-1191.

3https://www.alz.co.uk/news/covid-19-sharing-experience-and-advice-from-adis-member-association-in-china 

4 Butler, M. J.& Barrietos, R. M. 2020. The impact of nutrition on COVID-19 susceptibility and long-term consequences, Brain Behavior & Immunity, April 18, doi: 10.1016/j.bbi.2020.04.040 [Epub ahead of print].

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Seeking Support while Safe at Home

As dementia caregivers, many of us had some external support systems in place before the Safer at Home mandate. With support groups, memory cafes, senior centers and adult day centers closed, we are struggling to find replacements. Adapting to a new in-home routine has its challenges. Limited outdoor spaces for exercise, and increased isolation has added a new dimension to our dementia caregiving. Many are adapting to technology in order to seek support and guidance.

But how effective is internet-based interventions?

Research looking at psychological interventions for dementia caregivers identified four types of caregiver intervention:

  • Psychoeducational
  • Counseling and psychotherapy
  • Multicomponent programs
  • Mindfulness-based interventions

In all four types, researchers concluded that they were efficient and effective when aided by technology-adaptation for delivery.1 This is validation that even in a pandemic, we as caregivers can access effective tools to manage the tough changes dementia brings.

Research looking at delivery method found that internet-based interventions were effective in addressing family caregiver well-being, in particular depression, anxiety, and burden.2 Online psychological interventions showed improvements in caregiver mental health. This was particularly so when it was tailored to the individual and used in a multicomponent intervention. Online peer support was appreciated by participants and had positive effects on stress.

In fact, a metanalysis of internet-based interventions’ effectiveness in overall chronic care showed positive outcomes in caregiver depression, stress, distress and anxiety.3 These positive effects were particularly evident in interventions with information and education (with or without professional psychological support) with a lesser impact from peer and psychological support.

Once again education and seeking help shine as primary aids to our resilience as effective care partners.

As we dealing with a limited daily routine, a good strategy would be to include technology as a mainstay for navigating our stress, seeking support and staying informed. Include virtual support groups, virtual memory cafes, and educational webinars as keystones of your week, for both your loved one’s mental health and your own.

Footnotes  

1Spenser, L., Potterton, R., Allen, K., Musiat, P., & Schmidt, U. (2019). Internet-based interventions for carers of individuals with psychiatric disorders, neurological disorders, or brain injuries: Systematic review, Jul 9;21(7): e10876, doi: 10.2196/10876.

2Sherifali, D., Ali, M.U., Ploeg, J, Markle-Reid, M., Valaitis, R., et al., (2018). Impact of internet-based interventions on caregiver mental health: Systematic review and meta-analysis, Journal of Medical Internet Research, 20(7): e10668. Published online 2018 Jul 3. doi: 10.2196/10668.

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Enduring the Pause

This season is one of a lot of symbolism in the Judeo-Christian culture. Whether it is saving an empty chair at the Passover Seder for Elijah or the wait between Good Friday and Easter Sunday—there is a pause.

As a world we are experiencing a pause, with vague hopes of what will return, trepidation of what will be different. Being in the present is confounded by our internal fears, our impatience and our discomfort with change.

As dementia care partners we too have many pauses, whether they are valleys of decline or plateaus of stability—the difficulty lies in staying focused in the present. 
Flamboyant, Castilla, Ponce
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