Repetitive reminiscences are usually a sign of dementia. When a loved one tells you the same stories over and over, it can try your patience like a scratched record. But once dementia caregivers understand WHY people with dementia do this, it becomes easier to manage.
For family caregivers, their relationship to the person with dementia will be forever changing and forever changed by dementia. Although it may be hard to break the old patterns, they often don’t work anymore.
It happened again last night. I went upstairs during a TV commercial to get something from my bedroom, but when I reached my bedroom door, I couldn’t remember what I’d come all the way up there for. I scanned the room. Maybe I would see the thing I meant to retrieve. Once, twice I combed the contents of the room with my eyes. Nothing. I gave up. Why does this keep happening? Was this a glimpse into the future I pray I do not inherit from my father?
Why does this keep happening?
No! It’s actually quite normal for this to happen – especially as we age. So if you, too, can’t remember why you stopped what you were doing to go get something or do something in another room – and you only remember what you wanted when you return to the place where you decided you wanted it – you are completely normal. Here’s why.
Visual data is the most important sensory data to our survival. We rely a great deal on our hearing, but we most prefer to process the world around us, and respond to it, based on what we see.
It’s not really true to sa that we see with our eyes. We receive visual data through our eyes, but it is in the occipital lobe that we process that data. It is way back in the back of our skull where we see that round, red object as a kickball, or that open, black circle as a tire. It is in the occipital lobe that we detect form, color, depth, motion, light, and shadow. And it is the occipital lobe that heavily embeds code into our new memories.
Near the center of the skull lies the hippocampus. This is where new memories are formed. This is where I created the new memory that there was a chill in the October air, and a fleece would be nice – better than turning the furnace on. When I formed the memory that I would get my fleece jacket from my bedroom during the next TV break.
Encoded in that memory were the images of the television in front of me, the wood paneling behind it, and the black and white photo hanging above the screen. But when I left the room to climb the stairs, the imagery changed.
The threshold effect.
Because I am not young, my working memory is past its peak. For most people, many aspects of working memory peaks in our 20s or 30s.[i] But for me and most my age, we can’t hold as much information in working memory as we used to hold. So our brain arbitrates which information stays and which is determined to be no longer necessary. The hierarchy is based in part on time[ii], so recency is highly tied to relevance. This creates a sort of threshold effect; when we leave a room, we discard certain bits of data.
So as I was navigating through my house, thinking about what I’d just watched on TV, remembering to move the clothes from the washer to the dryer, recent bits of data were getting shuffled around. Coupled with the fact that my fleece memory was missing bits of visual data, I could not recall the purpose of my trip to the bedroom.
Did scanning the room help?
No! What would have been really helpful would have been the missing data. This is why I could only remember the purpose of my trip upstairs when I sat back down on the sofa and in front of the TV.
Perhaps I could have recovered if I instead had closed my eyes, imagined myself sitting on the sofa, looking at the TV screen, seeing what I was seeing when I decided to get the fleece in the first place. I will try this next time. These days, my stairs are more like a StairMaster® than I would like…
Try this instead.
I bet this happens to you, too, if you are beyond a certain age. While you are standing at the bedroom door, don’t scan the room. Try rewinding to the moment you had the thought to go get something from somewhere else. Visualize what you were looking at when you had the thought. What visual imagery surrounded that? Scan that room. You just might remember why you left and save yourself an extra trip.
[i] Hartshorne, J. K., & Germine, L.T. (2015, April). When does cognitive functioning peak? The asynchronous rise and fall of different cognitive abilities across the life span. Psychological Science. 26(4), 433-443. http://cognitivehealth.tech/wp-content/uploads/2017/01/psychsci2015.pdf
[ii] D’Esposito, M. (2007). From cognitive to neural models of working memory. Philosophical Transactions of the Royal Society of London. Series B, Biological Sciences, 362(1481), 761–772. doi:10.1098/rstb.2007.2086
Caregivers have the best intentions at heart. We all want to savor those parts of the relationship with our loved one that we’ve known for decades. But when a loved one has dementia, the disease interferes more and more often, hiding the person we remember. It can be so frustrating to ...
The resource helps family members and medical professionals better understand the disease and how to anticipate and address the needs of those living with dementia.
New Street Compass, which provides mentoring to caregivers, announces the release of The Dementia Field Guide, a resource for those caring for people with dementia. Author and New Street Compass founder Cloud Conrad developed The Dementia Field Guide to address aspects of caregiving for dementia patients that other resources don’t cover. The book outlines the intricacies of how Alzheimer’s and other dementias affect the brain and equips caregivers to handle the practical, relational and emotional changes over time.
“Most caregiver education is extremely generic and doesn’t provide guidance to the specifics of a caregiver’s situation because so many variables are in play with dementia. No textbook can best address specific situations because each person’s progression of dementia is as unique as the individual themselves. Dementia affects the brain as well as an individual’s personality, experiences and relationships. What caregivers need is actionable, useful guidance to help them feel more confident and competent in their own situation,” Conrad said.
The Dementia Field Guide is a handy, self-paced reference, geared toward family members who become caregivers, along with medical professionals/independent caregivers. Conrad has discovered that these groups feel ill-equipped to handle practical, relational and emotional changes in those with dementia. They may face fear, frustration and anxiety about how to handle uncertainty and unexpected situations. The book is also a helpful resource for assisted-living facilities, where the demand for service exceeds capacity and staff turnover is high. The Dementia Field Guide offers long term care trainers a well-thought-out and organized approach to teach professional caregivers how to provide the most beneficial dementia care. This training material can support employee and resident recruitment.
Unique Disease Requires Unique Approach
According to the Alzheimer’s Association, nearly 6 million Americans have dementia. Mathematically, therefore, one in every five families is affected by the disease. By 2035, sources project that one in every two households will be affected, which is why it’s important to become more educated on the disease.
The Dementia Field Guide helps “unlock the brain of dementia,” providing caregivers with the knowledge and understanding to feel confident and competent when they assume the caregiving role. Conrad outlines the role of eight key brain functions in everyday living, how dementia changes them and what can happen as the decline progresses.
Unlike cancer or heart disease, dementia requires a different set of bearings for caregivers, as it’s the only disease that affects a person’s memory, thought processes and actions. The Dementia Field Guide outlines foundational principles to help to set the direction of caregivers’ approach to dementia – the Dementia Caregiver Compass. Conrad based the principles on the idea that the universal human needs we all share remain constant for people living with dementia. In addition to physiological and safety needs, they still feel the need to belong, to be valued and to have purpose. These needs motivate action but cognitive impairment from dementia distorts their attempt to address them.
“Just as we use points on the compass to find our way to a new destination, the Dementia Caregiver Compass is needed to navigate dementia successfully, charting a course out and away from challenging situations and maintaining your bearings to reach a more serene place, as easily as possible. Instead of directional points, the Dementia Caregiver Compass has points of intention,” Conrad said.
Other caregiving training programs frame many of the scenarios caregivers encounter as challenging behaviors or dementia-related behaviors, but Conrad takes a different approach in the Guide.
“Thinking of these scenarios as ‘behaviors’ silently encodes them with judgement and implies a need for correction or consequences. When we view the actions of a person living with dementia as ‘behaviors,’ we are operating from the false position that the person has chosen such actions and reactions,” Conrad said. “When we view the changes in memory, thoughts and actions as symptoms of dementia rather than a logical, conscious attempt to fulfill a need, we are better positioned for success in caregiving. This is an important differentiator of my approach.”
Caring for the Caregiver
The Dementia Field Guide also addresses how caregivers can protect their own well-being. Having been a primary caregiver for two family members, Conrad understands that emotional support is as necessary for caregivers of dementia patients as knowledge and skill. This support can help them pilot the obstacles between the present state they’re facing and a desired state free of stress and anxiety. Conrad knows this from research as well as her personal experience mentoring caregivers and as a caregiver herself.
During the three years her father lived in an assisted care facility, Conrad made several observations, which helped shape the book. Family members seemed afraid of being able to cope with their loved one’s changes in behavior, words and actions – worried they may do something wrong and make things worse.
“I learned that no matter how wrong I did something my father and I were both better when going through his dementia together. I realized if I did something wrong today, I would have another chance to figure it out tomorrow,” Conrad reflected. “Eventually, I did. But it would have been so much easier to have had a guide book like this back then. “What I know from my experience, training and practice is that the information in this Guide is key to providing caregivers the knowledge, tools and confidence to problem solve their own situations.”
The Dementia Field Guide is available for purchase online. The retail price is $29.99.
New Street Compass also is hosting two online courses starting in January 2021 for anyone wanting to learn more about dementia. Conrad will present the content, which is relevant for family members, professional home health aides, and health care personnel in an assisted living or memory care home. Registration is required and space is limited. Learn more.
Use this time – when the person living with dementia has the greatest mental capacity for communication they will ever have again – to hone your approach and skills in communication as a dementia caregiver.
Dementia will impact 1 in 2 families by 2035.
When I educate people about Alzheimer’s and dementia, one of the first things I share is the prediction that dementia will impact 1 in 2 families in just fifteen years, with the increasing prevalence these diseases have in the US. And when I say this, people invariably gasp. No! How can this be? This is awful!
It IS awful. But no one has ever challenged me on it. Since I am interviewed more and more as a dementia caregiver trainer and consultant, I decided I’d better be able to explain my basis in case someone ever did. I based my math on authoritative sources, like US Census Bureau, The Joint Center for Housing Studies of Harvard University, and the Alzheimer’s Association to build my logic case below. It’s kind of alot to take in, so I have also presented it pictorially in this infographic.
One in Five Households Affected by Dementia Today
5.8 million people are living with dementia today. There are currently 128.6 households in the US. Therefore, on average, at least one in every 22 US households currently includes a person living with dementia. However, multiple generations of families are affected by each case of dementia – in the caregiving role. I’ll show below how this computes.
Each US household is comprised of 2.6 members and each family averages 3.1 members. Simply speaking, let’s consider this three family members per household. 16 million family (unpaid) caregivers support the 5.8 million people living with dementia today. This means that every person living with dementia has 2.8 caregivers, on average. Let’s agree to consider this three people.
Who are the caregivers?
One third of all dementia caregivers are 65+. Over half of dementia caregivers are taking care of a parent. Two in three dementia caregivers lives with the person in their care. Theoretically, if a person living with dementia is living with two caregivers and at least one is 65+, those caregivers are most likely a spouse and an adult child. A second adult child lives separately.
The oldest members of the baby boomer generation turned 75 in 2019. Fifty years ago they were of family forming age. According to the 1970 US Census, the number of “own children” under age 18 living in the average US household was 2.3. Conservatively, that’s two children per household. For argument’s sake let’s say that, of these two children, at least one of them has children who are now adults, forming their own households.
At a family level, then, every diagnosed dementia affects four households (that person’s home, another caregiver’s home, two adult grandchildren with their own homes).
At the community level, if one person with dementia is living in every 22 US households, and every case of dementia affects four homes, then one in every five US households is affected today.
One in Two Families Living with Dementia by 2035
The single greatest risk factor for dementia is advancing age. Medical advances continue to extend life expectancies, while the oldest Baby Boomers – the largest US age group – just begin reaching 75 in 2020.
Current projections estimate that by the year 2035, 10 million people will develop dementia in the US. Among the approximate 140 million US households (age 25+) projected by 2035, one in every 14 dwellings will be home to someone living with dementia.
About 87% of all diagnosed cases of dementia will be in people 75+, an increase from 83% in 2019. As the population of Americans with dementia ages, more of their descendants will reach age 25 and begin forming their own households and families. It’s reasonable to expect that a 75 year old would have at least one adult grandchild, and likely more. 75 – 84 year olds are expected to represent about 48% of all dementias in 2035. Those 85+, representing about 39% of all dementias, are extremely likely to have four adult grandchildren based on past and projected US family size.
Based on these historic and predictive data, each case of dementia is expected to impact six US households by 2035. Therefore, just 15 years in the future, dementia will impact one in every two homes.
Download the infographic.
 Alzheimer’s Association, 2019 Alzheimer’s Association Facts and Figures, 19.
 “Average number of own children under 18 in families with children in the United States from 1960 to 2019” Statista, https://www.statista.com/statistics/718084/average-number-of-own-children-per-family/ (March 1, 2020).
 “Households and Families 2010”, US Census, https://www.census.gov/prod/cen2010/briefs/c2010br-14.pdf (March 1, 2020), Table 2.
 2019 Alzheimer’s Association Facts and Figures, 31.
 Liesi E. Hebert, ScD, Jennifer Weuve, ScD, Paul A. Scherr, PhD, ScD, and Denis A. Evans, MD, “Alzheimer disease in the United States (2010–2050) estimated using the 2010 census”, Neurology (May 7, 2013), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3719424.
 Daniel McCue, “Household Projections”, Joint Center for Housing Studies, Appendix Table A-1: Summary of JCHS 2018 Household Projections by Age, Race/Ethnicity, and Household Type, (November 29, 2018), https://www.jchs.harvard.edu//research-areas/working-papers/updated-household-projections-2015-2035-methodology-and-results.
 Hebert, et al. Table 1 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3719424/table/T1/?report=objectonly.
As a family member, a care giver or a home service provider you want the people you help to be comfortable, not anxious, in your presence. To be perceived as a threat, on any level, does not serve anyone. How do we get off on the right foot?
It’s not that my sisters and I didn’t know something was up. But we mistook what we saw for something else. To some degree we did this willingly, but certainly out of ignorance. That Dad appeared functional, if quirky, validated our choice for denial. He managed, well into the middles stages of Alzheimer’s, with the assistance of what I call his “network of complicity”.
As with saying, “I do”, these two little words create a powerful bond between people. But unlike the wedding words, the simple phrase “Yes, and” does not initiate an obligation. What it sets in motion is a relationship of acceptance, which changes the chemistry between people from contracted to collaborative, cooperative and co-creative. If you...