Tag Archive | vascular dementia

The Layperson’s Guide to Early-Onset Dementias

There are several types of common early-onset dementias. Early-onset dementias are categorized as dementias where the onset of symptoms is prior to age 65. These dementias can occur as early as the 30’s, but more typically become symptomatic in the 40’s and 50’s.

Early-onset dementias, unfortunately, are still off the main grid for medical staff – a classic instance of fixed expectations that dementias won’t be an issue for a person until after age 65 – and our loved who are diagnosed with early-on dementias face challenges that our older loved ones who are suffering with these diseases don’t face. These include:

  • Difficulty getting a correct diagnosis
  • Loss of employment and income
  • Difficulty getting Social Security Disability Insurance, Medicaid, and other employment-related disability insurance
  • Loss of health insurance and high-out-of-pocket costs for medical care
  • High out-of-pocket costs for long-term care
  • Lack of appropriate medical care, residential care, and community services (all of these are geared toward an older population)

Early-onset dementias typically are harder to diagnose because other than the dementia systems, sufferers are usually healthy, active, and aware there is a problem.

Additionally, the symptoms of early-onset dementias usually don’t have memory impairment as the predominant feature. Most often, behavioral and personality changes occur first, so usually the first type of treatment is psychiatric instead of neurological.

The causes of early onset-dementias fall into three categories: random, genetic, and lifestyle.

Random early-onset dementias are just that. There’s no concrete link to a cause. My opinion is that few of these in this category are actually random, but the causative issue(s) have not been identified yet.

Genetics plays an important role in certain early-onset dementias (and, although the scientific community has overlooked or disregarded the familial aspect of elder-onset dementias, it appears very likely, from observation, that if there’s a family history of elder-onset dementias, there may be a genetic predisposition for development of elder-onset dementias in subsequent generations).

Three genes are known to have mutations in the case of some sufferers of early-onset dementia, Alzheimer’s type (symptoms related to these genetic mutations usually begin in the 30’s and 40’s):

  • Amyloid precursor protein gene (APP) on chromosome 21
  • Presenillin-1 (PSEN-1) on chromosome 14
  • Presenillin-2 (PSEN-2) on chromosome 1 

We’ve talked extensively here about lifestyle dementias with regard to management of health (blood pressure and blood sugar) and substance abuse, as well as with regard to what we eat and how we live daily life. Some of the early-onset dementias we will talk about here can be directly attributed to lifestyle.

There are several types of early-onset dementias.

At least 1/3 of all sufferers diagnosis with early-onset dementia have Alzheimer’s Disease (remember that Alzheimer’s Disease is a type of dementia, but is not inclusive of all types of dementia, just as all photocopiers are not Xerox photocopiers and all facial tissues are not Kleenex facial tissues).

Onset symptoms include progressive and episodic memory loss, as well as visuospatial and perceptual deficiencies, but intact language and social functioning.

early-onset dementia, Alzheimer's type, Pat SummittThis type of early-onset dementia is more common in women than men. Once symptoms appear, the duration of the disease averages eight years.

A recent example is the 2011 diagnosis of former University of Tennessee women’s head basketball coach, Pat Summit, who was diagnosed with early-onset dementia, Alzheimer’s type, at age 59. Coach Summitt stayed with the team one more season, but was not actively coaching that season.

Coach Summitt retired in 2012 and has begun the Pat Summit Foundation to raise Alzheimer’s Disease awareness.

"Still Alice" by Lisa Genova - early-onset dementia, Alzheimer's typeThe novel, Still Alice, written by neuroscientist Lisa Genova, gives a scientific, compassionate and compelling look from the inside out of a 50-year-old Harvard psychology professor as early-onset dementia, Alzheimer’s type enters and progresses through her life.

Since the publication of Still Alice in 2007, Genova has continued her work with bringing the neuroscience of all types of dementias in the same compassionate and compelling style of her first novel through subsequent books and through documentaries produced with her husband, who is a filmmaker.

MRI-vascular-dementia-diffuse-white-matterThe second most common type of early-onset dementia is vascular dementia. Vascular dementia can occur because of:

  • Multiple cortical infarcts (small areas of tissue that have died from the lack a blood supply) that are most often caused by transient ischemic attacks (TIA’s) or silent strokes and characterized by stepwise deterioration of cognitive function
  • Small-vessel disease, resulting in a more subtle decline of cognitive function
  • Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL)
    • Rare cause of early-onset subcortical strokes and dementia
    • Caused by a mutation of Notch 3 gene on chromosome 19
    • MRI shows diffuse white matter lesions on the cerebral hemispheres, especially in the anterior temporal lobes and external capsules

With early-onset vascular dementia, there are usually lifestyle factors involved such as uncontrolled or undetected high blood pressure and an unhealthy diet. Recent scientific research has also linked high cholesterol levels with the development of vascular dementia.

frontal and temporal lobes function FTD early-onset dementiaThe third most common type of early-onset dementia is frontotemperal dementia (FTD), also known as Pick’s Disease, which affects the frontal and temporal lobes of the brain. FTD usually has an onset between the ages of 45 and 65. Its average duration is eight years. 

There are three types of FTD: behavioral variant FTD, semantic dementia, and primary progressive (also known as progressive nonfluent) aphasia.

In about half the cases of FTD, there is a positive family history for the disease, indicating a probable genetic link (although researchers have not yet identified the genetic mutation).

FTD can co-occur with motor neuron diseases (ALS, also known as Lou Gerhig’s Disease, is an example of a motor neuron disease), but only about 10% of sufferers of only motor neuron diseases develop dementia, resulting in a very aggressive course of the illness.

FTD presents differently from early-onset Alzheimer’s Disease and early-onset vascular dementia because the first symptoms involve changes in personality and social conduct while memory, perception, and visuospatial skills remain unchanged.

The most common indicators are:

  • Behavior disturbances
  • Personality changes
  • Decreased motivation
  • Reduced empathy
  • Impaired planning
  • Impaired judgment
  • Speech and language difficulties

As FTD progresses, other symptoms become apparent:

  • Difficulty behaving appropriately in new and unfamiliar situations
  • Loss in inhibitions (disrobing is not uncommon)
  • Loss of social skills
  • Emotional outbursts
  • Impulsivity
  • Executive function deficits
  • Decreased verbal fluency
  • Compulsive or repetitive behavior
  • Lack of insight
  • Self-neglect
  • Inappropriate sexual behavior

The semantic dementia form of FTD includes symptoms of:

  • Difficulty with correctly naming objects (people, places, and things)
  • Impaired understanding of the meaning of words
  • Inability to understand substitute words

However, in this form of FTD, speech remains fluent and cognition remains intact. MRI scans show more atrophy of the anterior temporal lobe than the posterior temporal lobe.

The primary progressive (progressive nonfluent) aphasia form of FTD is characterized by:

  • Progressive decline in all language skills, with no other cognitive deficits
  • Increased difficulty with speech and speaking (by the end of the disease, most sufferers don’t speak at all)
  • Speech and speaking is not fluent and requires a great deal of effort

MRI scans show predominant atrophy of the left perisylvian region of the temporal lobe.

The fourth most common type of early-onset dementia is Lewy Body dementia. I’ve included the link to my post about Lewy Body dementia for a full description, but will include a brief summary of the dementia’s Lewy Body Protein - Lewy Body dementiaprimary symptoms:

The fifth most common type of early-onset dementia is Wernicke-Korsakoff Syndrome (alcohol-related dementia). This is a lifestyle dementia, brought on by long-term, heavy alcohol consumption.

wernicke-korsakoff dementia (alcohol-related dementia)

Characteristics of Wernicke-Korsakoff Syndrome include:

  • Damage to the limbic structures and frontal lobes
  • Memory impairment
  • Executive functioning impairment
  • Autobiographical memory is frequently affected resulting in confabulation (making up stories)
  • Memory loss stops where it is when drinking stops (damage already done remains)

As shown by the MRI scan above, there is general cortical atrophy along with damage to the frontal, parietal and cingulated regions of the brain, with the majority of the damage occurring in the frontal lobe.

There are two other less common types of early-onset dementia that we’ll discuss.

One is Huntington’s Disease. As this genetically-inherited disease progresses, dementia develops.

MRI Huntington's DiseaseEveryone is born with this gene. However, in Huntington’s Disease, an inherited mutated copy of this gene (on chromosome 4), produces a defective form of the huntingtin protein that causes degeneration and death of the neurons, especially in the center of the brain. 

Because this gene is a dominant gene (as opposed to a recessive gene), everyone who inherits the mutated copy of the gene will, at some point, develop Huntington’s Disease.

Symptoms typically appear between ages 30 and 50, but it can begin at a very young age or appear in the very elderly. Primary symptoms include:

  • Lack of muscle coordination in the arms, legs, head, face and upper body
  • Progressive decline in thinking and reasoning skills, including memory, concentration, judgment and the ability to plan and organize
  • Mood disturbances, including depression, anxiety, anger, and irritability
  • Obsessive-compulsive behaviors

The last type of early-onset dementia, which is extremely rare, is Creutzfeldt-Jakob Disease (CJD). CJD is characterized by rapid neurological degeneration. It is always fatal, and death usually occurs within six months to a year of onset.

CJD belongs to a class of human and animal diseases called transmissible spongiform encephalopathies (TSEs), because the infected brain looks like a sponge. The average age of onset for CJD is 60.

“Mad Cow Disease” is the bovine equivalent of CJD (although it tends to affect younger people, with the average age of onset being 26). 

There are three types of CJD:

  • Sporadic (no known cause) – accounts for about 90% of cases
  • Inherited (family history of the disease) – accounts for 5-10% of cases
  • Acquired (transmitted by exposure to brain or nervous system tissue, usually through certain medical procedure) – accounts for less than 1% of cases

Creutzfeldt-Jakob Disease MRIThe symptoms of CJD include:

  • Rapidly progressive dementia
  • Problems with muscular coordination
  • Personality changes, including impaired memory, judgment, and thinking
  • Impaired vision
  • Insomnia
  • Depression
  • Lethargy

As CJD progresses, mental impairment becomes severe. Sufferers often develop involuntary muscle jerks (myoclonus), and they may go blind.

Eventually, they lose the ability to move and speak and become comatose. Pneumonia and other infections often occur as well, and they generally end in death.
 

An Overview of the Most-Commonly-Used Medications to Treat Symptoms in Alzheimer’s Disease and Dementias

There is no cure for dementias or Alzheimer’s Disease. Once the journey begins, its course is downhill, sometimes gradually, sometimes rapidly, but always in decline. 

There may never be a way to prevent these neurological diseases from occurring before the damage is done – I’m going through several neurology-related courses right now and the professors teaching these courses readily admit there is more about the brain’s chemistry, physical structure, communication systems, and function that is not known than is known – but once dementias and Alzheimer’s Disease have begun to damage the brain, there is no remedy.

The brain is a unique organ in the body in that once cells in the brain die, they do not regenerate themselves. They’re dead and gone.

seroquel-namenda-drugs-alzheimer's-disease-vascular-dementia-lewy-body-dementia-going-gentle-into-that-good-night

The neurological damage of dementias and Alzheimer’s Disease cannot be reversed.

So when Mama’s diagnoses came in late July 2010, I had a unique and personal perspective on what that meant for her and for me. “Mid-to-late-stage vascular dementia and mid-to-late-stage Alzheimer’s Disease” from the psychiatrist at the geriatric psychiatric hospital that Mama was in after her meltdown on July 10, 2010 didn’t surprise me. But I knew there was no cure, no going back, no fix.

I transitioned, probably more easily than most family members who hear this for the first time, to “what can we do to stabilize?” The psychiatrist assured me that stabilization was possible, but it would take time and tinkering with the medicines that the symptoms of dementias and Alzheimer’s Disease demand.

I was almost convinced that nothing could turn around the psychosis that Mama was experiencing in full throttle in those days. I realized my own helplessness to help her and make it better for her. I experienced a lot of guilt and inner turmoil because nothing I was doing was working and I knew how much she was suffering and how afraid she was and it was all out of her control and my control.

I was also extremely sad. This was not the mama who had, with open arms along with my daddy, brought my sisters and me into their home through adoption, loving us with a fierceness and tenacity that we struggled with at times but also realized over time was the real deal. This was not the mama who opened her arms, her heart, her door to me when life was banging against me and threatening to destroy me. This was not the mama who put up with me and loved me in spite of myself, at times, unconditionally.

How could I not do the same for her after all she (and Daddy) had done for me? They loved me in spite of myself. How could I not love Mama in spite of herself? This was a no-brainer for me.

It was during the geriatric psychiatric hospital stay that I learned about many of the most-commonly-used medications used to control and improve the symptoms of dementias and Alzheimer’s Disease.

drugs-alzheimer's-disease-dementia-going-gentle-into-that-good-nightAll the medical professionals involved in Mama’s care were very careful to tell us repeatedly that the medications they were trying with Mama were controlling symptoms only.

Since Mama was experiencing hallucinations, paranoia, and delusions, the psychiatrist prescribed SeroquelXR (50 mg twice a day), Citalopram (40 mg a day) for anxiety, Namenda (generic: memantine) for cognition enhancement, Exelon (24-hour-patch/4.6 mg – this is also available in oral form since the patch can cause skin irritation) for cognition enhancement, and Clonazepam (.25 mg/PRN) for extreme agitation as the dementia and Alzheimer’s Disease medication regimen for Mama’s symptoms.

And it worked.

I gave Mama Clonazepam only twice in two years (it knocked her out and I didn’t like the side effects, but it was for extreme agitation and there were only two times when she was agitated to the point of fearing for her heart health, that I decided to give it to her). The rest of this combination of anti-psychotic, anti-depression, anti-anxiety regimen gave Mama a better quality of life from near the end of July 2010 until her death on August 14, 2012.

With the exception of SeroquelXR.

Just after Thanksgiving 2011, Mama awoke one morning with tardive dyskinesia. At the time, I didn’t know what it was, but Mama was scared (and so was I as I watched the involuntary movements that rhythmically were going through her body).

I got Mama to the ER, where a nurse practitioner, who refused to listen to me (and the nurses who were with Mama and me and with whom we were talking to all day) for eight hours, was convinced that the tardive dyskinesia was Mama’s pacemaker going haywire.

So we waited all day in the ER for a cardiac consult that tested Mama’s pacemaker and confirmed it was working properly and not the problem (which I’d been telling the nurse practitioner all day because we’d just had it checked the week before).

Finally, the nurse practitioner decided to admit Mama, and late-stage tardive dyskinesia was diagnosed with the culprit being SeroquelXR.

Mama had Lewy Body dementia as well. It was not diagnosed (a firm diagnoses cannot be made without an autopsy of the brain, but symptoms are quite obvious while our loved ones are living), but I’d seen it, not knowing what I was seeing (I began researching it after Mama’s full-blown symptoms starting appearing in January 2012), just after Mama had gotten out of the geriatric psychiatric hospital when we were going to doctors’ appointments together.

Anti-psychosis drugs and Lewy Body dementia don’t mix well together. Mama was fortunate that she was able to stay on SeroquelXR as long as she was, and for that I am thankful. But we reached a point where we had to choose between mood and hallucinations/delusions.

I chose to help Mama with her mood. I knew I could handle hallucinations and delusions (although, in reality, what I thought I could handle still turned out to be surprising and perplexing, causing me to have to scramble to try to adjust with honesty and integrity even when things got way out of my comfort zone), but I could not handle Mama’s mood swings with these diseases.

So we (the hospitalist and I) went with Depakote Sprinkles (100 mg, 3 times a day – I could mix it with foods and drinks and make it easier for Mama to take) with the hospitalist telling me that Mama’s hallucinations and delusions would come back. 

They did, but they were not particularly scary for Mama (I think because I was there), but they often threw me for a loop initially. I’m probably the least spontaneous person on the planet, so adjusting to these was particularly hard for me, but eventually, I got better at dealing with them and easing Mama’s mind. A new normal for both of us.

These medications that Mama was on are not the only ones used to treat the symptoms of dementias and Azheimer’s Disease, but they are the most common in the mid-to-late stages.

In the early stages, Aricept is commonly prescribed. From everything I have read and heard, it’s efficacy is limited. I believe that this is because by the time most people are diagnosed with dementias and Alzheimer’s Disease, they are already beyond the early stages of the diseases.

I would caution all of us as caregivers to make sure our loved ones are not over-medicated. Many of the anti-psychotics and anti-anxiety drugs can anesthetize our loved ones to an almost-coma-like state, which is not what we or they want or need.

We are their advocates. We are the only people who can fight for our loved ones medically. We have a responsibility to make sure our loved ones suffering from dementias and Alzheimer’s Disease have the best quality of life they can have for as long as they can have it. This is our obligation to them. 

So unless anti-anxiety drugs are absolutely necessary and unless morphine and its derivatives and cousins are absolutely necessary, please don’t give them. They deprive our loved ones and they deprive us of quality time in the face of these terminal diseases. Nobody wants that.

There are medications that I haven’t talked about in this post. If you want to know about any medications that your loved ones may be taking, please comment here or email me at goinggentleintothatgoodnight@gmail.com. I’ve researched many, if not all, the medications used to deal with the symptoms of these diseases, so I’ll be happy to help you with any questions you may have.

Lessons We Learn from Caregiving for Our Loved Ones With Dementias and Alzheimer’s Disease

In Nick Norton’s blog post, “10 Things Caregiving Taught Me in 2013,” he lists some of the things he learned from caregiving, along with his mom, for his grandfather who suffered from Alzheimer’s Disease (his grandfather died in June 2013). 

Several of Nick’s lessons resonated with me from my own experiences caregiving for Mama the last several years of her life as she suffered with congestive heart failure, vascular dementia, Lewy Body dementia, and Alzheimer’s Disease. The lessons I learned were ones that I could not have learned any other way or through any other of life’s experiences.

That makes them priceless, although I would not have ever wanted Mama to have to go through what she went through so that I could learn them. However, I consider these lessons that I learned as Mama’s last and lasting gifts to me, giving to and helping me, as she wanted to and did with so many other people throughout her time on this earth.

One of the lessons Nick and I both learned is that until you’ve been a caregiver for a loved one with dementias and Alzheimer’s Disease, you will never be able to fully understand what it entails.

In the caregiving realm, it is a unique experience. Not only are you dealing with normal aging issues and health concerns, but you are also actively losing a family member – a mentor, a matriarch, a patriarch, a counselor, a beloved friend – while he or she is still alive (in these neurological diseases, we actually lose them twice).

Unlike caring for and raising children, our loved ones with dementias and Alzheimer’s Disease regress instead of progress. Their communication issues increase instead of decreasing. Their complete dependence grows instead of declining. Their vulnerabilities, fears, and anxieties of a lifetime on this planet come back around in full force as their worlds get smaller instead of the dissipation a child experiences as his or her world gets bigger. Their suffering will never get better. Instead, it will increasingly get worse. There’s no way to fix it, no hope for improvement, no expectation of positive changes.

It is truly a 24/7 responsibility. There is no down time. And each journey is unique, so as caregivers we are constantly responding to and adapting to surprises, to the unexpected, to the unknown. It can be both extremely mentally and physically exhausting.

Lessons Learned From CaregivingThe whole experience can be a very difficult thing to actually wrap your mind around, to alter your thinking to adapt to, to, in short, accept and roll with on an even keel. In my experience, this is next to impossible for many people to do, deal with, and stay with for the duration.

That ability is one of the many things that makes caregiving for our loved ones with dementias and Alzheimer’s Disease unique. And it makes those of us who choose to do this unique.

Another of the lessons that Nick learned was to pray regularly. Although I’ve always prayed regularly, it was through caregiving for Mama that I really began to understand and practice Paul’s exhortation to pray without ceasing and Peter’s reminder to cast all my cares on Him.

My prayers became more continual, more deeply personal, and my relationship with God more intimate and more strong, as it remains and continues to grow in to this day and I intend for it to remain and grow in for the remainder of my life.

And looking for the joy in life was another lesson that, like Nick, I learned while caregiving for Mama. There were moments that we had the privilege of sharing together during those years that brought both of us joy and still make me smile when I think of them.

However, I find it much more difficult to find the joy in life in general now that Mama’s gone because it seems that life has gotten a lot harder for me since Mama’s death.

It’s proven to be extraordinarily difficult to find a smooth, seamless, and meaningful transition to the next phase of my life in the absence of being needed, useful, and worthwhile while caring for Mama.

These days,I frequently ask God that if I don’t have any more value in this life if He will just mercifully end it and give me the peace of death until the next phase He has planned for me (so far, His answer has been “no” and I have to accept that until He says “yes”).

But I still try to remind myself to look for joy, even if seems elusive and gone for good, at least in this phase of life for me.

There are life lessons each of us as caregivers for our loved ones with dementias and Alzheimer’s Disease will learn. Let’s remember not to get so caught up in the day-to-day, some of which will be sad, trying, frustrating, and full of epic fails, that we miss the bigger picture of what we’re being given the unique opportunities to learn and grow from.

The Implicit Agreement We Enter Into As Caregivers for Our Loved Ones with Dementias and Alzheimer’s Disease

For many of us as caregivers for our loved ones with dementias and Alzheimer’s Disease, we choose to enter into the agreement to care for them willingly, without any compensation (we don’t expect it), aware that, in the majority of situations, we will carry the responsibility with little to no help from others and that it’s a lifetime 24/7 obligation that we’re inextricably bound to until our loved ones die. 

trust honesty integrity alzheimer's disease dementiaWe also enter into an implicit ethical agreement with our loved ones when we assume responsibility for their care. We promise implicitly that we will be honest and trustworthy, that we will be supportive, that we will be comforting, that we will be loving, and that our loved ones will want for nothing.

As our loved ones with dementias and Alzheimer’s Disease – parents, grandparents, etc. – did for us when we were babies and children, we promise that, with as much equanimity as possible, we will bear the burdens, carry the worries, handle the vacillations of change, and never abandon them. 

The way I always look at this is that our loved ones (our caregivers) when we were babies and children didn’t know what they were getting into. They could not have possibly imagined or dreamed the things we would say, we would do, and sometimes the trouble and mischief we could find without even trying.

And, yet, for most of us, they hung in there with us, even though it was sometimes hard, sometimes maddening, sometimes frustrating, and sometimes almost unbearable (especially in the teenage years). They didn’t put us away some place, complain about the fact that no one in their families was helping out, or scream and rant and rave about us to other people (well, maybe they did to our friends’ parents when they were alone and traded horror stories about all of us, but we never saw any of evidence of that in their treatment of us).

By agreeing to be caregivers for our loved ones with dementias and Alzheimer’s Disease, we agree to do for them what they did for us. To complete the circle of life as we switch roles with them as they begin their exit from the stage of life.

How well are we living up to our agreement in all the areas that we agreed to?

love dementia alzheimer's diseaseSometimes it’s necessary to just step back and evaluate the agreement we made, why we made it, and whether we are fulfilling the terms that we agreed to.

I know these diseases take a heavy toll on more than just our loved ones. I walked this journey side-by-side with my mama for several years, at first not realizing fully what Mama was experiencing, and then once I did, dealing with it and Mama according to the terms I’d agreed to.

I had my moments of anger, frustration, impatience, and fear, but overwhelmingly what I experienced was fierce protectiveness, deep compassion, strong empathy, and unconditional love. No matter what I was going through, I knew what Mama was going through was worse. The more fragile her own position became, the stronger mine became to be her comfort, her safety, and her rock – even if, at times along the way, she wasn’t, because her brain was betraying her, able to recognize that.

It was never about me. It was always about Mama. Keeping that at the front of my mind and heart at all times helped me be there 100% all the time to do whatever needed to be done to help her.

This is an imperative mindset for us as caregivers. It’s a rare mindset because it has largely disappeared in the general population that has wholeheartedly embraced the “it’s all about me” mindset.

We live in a society that has become increasingly self-absorbed, self-centered, selfish, and whiney when even the littlest of things don’t go our way. We live in a society that is easily offended and gets hurt feelings on the turn of a dime, that is quick to give up on things and people when the going gets a little rough, that is all too ready to walk away from anything that poses a threat to our comfort zone or might require a little extra work to sustain. (The irony is that this same society expects from us the things it is unwilling to be, do, or give.)

selflessness dementia alzheimer's diseaseBut, as caregivers, we have chosen to take the road far less traveled by. The one that says we’re in it for the long haul. The one that says our skins are thick enough that we learn not to take the effects that our loved ones with dementias and Alzheimer’s Disease exhibit personally. The one that says we love and we care to the end. The one that says we never walk away.

It’s not a road that many are willing or able to walk. But for those of us who have walked it and are walking it to the end, we find that the rewards and the lessons and the love we acquire as part of the journey are priceless. And our loved ones find in us relentless champions, unsung heroes, faithful friends, and beloved spouses, children, grandchildren, nieces and nephews who show them we love them by who we are and what we do.

So let’s never forget the promises we made, the pledges that we made, the trust, integrity, and honesty that we committed to be worthy of when we chose to care for our loved ones. Always remember that they are counting on us to honor those and if we fail them, then who will step in and fill the gap?

Medical Advocacy and Support and Dementias and Alzheimer’s Disease

Author’s note: I originally posted this in June 2013, but I will now be reposting this every month, because it is one of the most important ways in which we can help and support our loved ones with dementias, Alzheimer’s Disease, and other age-related illnesses (“Going Gentle Into That Good Night: A Practical and Informative Guide For Fulfilling the Circle of Life For Our Loved Ones with Dementias and Alzheimer’s Disease“) offers a more comprehensive list of the areas in which we can offer help and support to our loved ones).

*****

Today’s post will discuss our role as medical advocates and medical support for our loved ones suffering from dementias and Alzheimer’s disease. Here I will provide practical advice and suggestions, from my own experience, in managing the medical aspect as easy, as straightforward, and as  un-disruptive for our loved ones as possible.

The very first thing we need to do as caregivers is to make sure medical wishes and medical legal authority – medical power of attorney – are documented and authorized (primary care physicians can do this; I suggest getting them notarized as well). Hopefully, these have been discussed enough so that either our loved ones have already taken care of them or we know what they want and are able to execute them ourselves.

For anyone reading this who is not a caregiver or suffering from dementias and Alzheimer’s Disease, now is the time to think about these because time and chance happen to us all. For those of us who are caregivers, these are documents we need to locate and keep in one place.

A medical power of attorney document designates who will make decisions when the person drawing up the document is unable to.

Living willA living will essentially specifies whether a person wants everything done possible to keep them alive, no matter how long, how futile, and how expensive or whether only comfort care is given when it’s clear that the end of life is at hand.

DNR (Do Not Resuscitate)A DNR (Do Not Resuscitate) document states that the person does not want to be resuscitated if he or she stops breathing.

I suggest getting a briefcase or backpack to keep all the documents related to the medical care for our loved ones in. The briefcase or backpack should be accessible at all times, so it goes everywhere we and our loved ones go.

The medical power of attorney, living will, and DNR should be kept together in a folder in the briefcase or backpack. The other items in this backpack should include medical history documents and an up-to-date list of of medications (I’ve attached a sample Excel spreadsheet you can download and for this). Get an inexpensive wallet to put a photo id and Medicare Part A and Part B cards in and keep that in the briefcase or backpack as well. Always have something (electronic or pen and paper) to take notes with.

It is important to remember that we caretakers have a responsibility to advocate for our loved ones with dementias and Alzheimer’s Disease with all medical professionals (primary care physicians, psychiatrists, nurses, dentists, hospital staff, home health staff, and hospice staff). However, it is equally important to remember that, unless our loved ones are in the dying process and, therefore, unresponsive, that we need to include them in all conversations, explain to them what is being discussed and why, and make sure the medical personnel include them as well.

While our loved ones may not understand everything, we must not treat nor let anyone else treat them as if they are invisible. This is probably one of the greatest gifts of love and respect we can show them.

We have to usually initiate this by stopping the conversation the medical professional is having with us, turn to our loved ones and hold their hands, make eye contact, and explain. Eventually, the medical professional will make eye contact with both us and our loved ones.

The reality is that we don’t really know how much our loved ones comprehend or understand. It’s my personal belief that they understand more than the diseases allow them to respond to. I also know that touch and inclusion are two basic needs we all share as humans, so it’s essential that our loved ones never feel excluded or unloved.

Hospitalizations are hard on elderly people. I don’t know all the reasons why, so I wouldn’t begin to speculate (although I have some opinions about it) as to why. For our loved ones with dementias and Alzheimer’s Disease, hospitalizations are not just hard, but extremely traumatic because of unfamiliarity of everything: people, place, and routine. Going into a hospitalization, we as caregivers must be aware that it will be a setback for our loved ones when they come home.

hospitalizationBecause of the traumatic effect of hospitalizations on our loved ones, it is critical that we as caregivers stay with them as much as we’re able during the hospitalizations. We are, even if some of the time they don’t know who we are, familiar. And our presence can help neutralize some of the fear and anxiety that often occurs during hospitalizations. 

Always have a “hospital bag” with clothes, toiletries, and other things our loved ones need packed. That bag goes every time we take our loved ones to the ER or with us as we follow an EMS transport. (It is imperative to be sure to wash the clothes from the hospital stay immediately and separately from any other laundry when we get home.)

Spend the night for as long as our loved ones are hospitalized. I know, because I’ve spent way more nights than I could ever count with my mom – even before her dementias and Alzheimer’s Disease diagnoses because I didn’t want her to be all alone – in the hospital, that there’s iffy sleep, awful coffee, and not-so-great food. But our loved ones are worth it. 

But spending the night has an additional, and equally-important, benefit. Most doctors make rounds between 7 pm and 8 pm in the evening and between 6 am and 8 am in the morning, so by spending the night we’re always there when the doctors are there so we can be current on what’s going on with our loved ones. I’ve found that, in general, hospital nurses either don’t know much or are too busy to take the time to give you real updates, so the only in-depth information you’re going to get will be from the doctors.

The other benefit of staying with our loved ones is that we can make sure they get the quality care and attention they need. It’s been my experience that most hospitals simply to don’t have enough staff to provide much personalized care, so if there is no one there with the patient, the patient just has to wait until someone gets around to him or her. By us being there, we can ensure that our loved ones are clean, taken care of, and not uncomfortable in any way physically. That’s one of the best ways we can serve them.

As I mentioned, expect a setback after hospitalization. It can last anywhere from a few days to a couple of weeks. Recovery will eventually occur, but it’s important to know that it will never return to the pre-hospitalization state. That’s just the nature of these diseases.

It’s important to be patient, loving, kind, gentle, and tender no matter what. It’s my opinion that most of the behavior is a way of expressing fear, so it’s important that we allay those fears and help our loved ones feel safe again. It takes time and a lot of deep breaths sometimes, but this is another way we show them how much we love them.

Is the Precipitous Rise in Dementias and Alzheimer’s Disease Over the Last Twenty to Thirty Years Linked to Lifestyle?

I have discussed lifestyle dementia, especially in the Baby Boomer generation and beyond, being a real concern for the near future.

One of the lifestyle factors that I discussed was improperly managed and uncontrolled diabetes. Diabetes can occur at any age, but it seems that more people in their 30’s and 40’s are, at the least, pre-diabetic, with many going on to be diagnosed with Type II diabetes. Type II diabetes used to be controlled with exercise and diet, but now typically includes non-insulin medication as part of the equation (Type I diabetes must be controlled with insulin).

One of those medications is the diabetes drug, Victoza (liraglutide [rDNA origin] injection). You’ve probably begun seeing a lot of commercials for this drug in the last couple of months here in the United States.  Victoza is also being tested to see if it can slow the progression of Alzheimer’s Disease.

Personally, in addition to dementias and Alzheimer’s Disease being labeled as diabetes III, some of the new research seems to me to show a more compelling link between high blood glucose levels and the burgeoning explosion of not only dementias and Alzheimer’s Disease in the elderly population, but also in people as young as their late 30’s.

processed-foodsI suspect – this is my opinion – our more highly-processed food diets combined with being overly sedentary are major factors in this. I’ve spent a lot of time thinking about why over the last twenty to thirty years, we’ve seen such an explosion in these two neurological diseases.

And we’re seeing an alarming increase in dementias and Alzheimer’s Disease at younger and younger ages.

And, it is, no doubt, in large part due to a greater toxicity in our natural environment (air, water, and even big-farm-grown food, with all the pesticides and herbicides that have, with prolonged use, permeated our soil and our water supplies so that we’re eating and drinking poisons every time we put “fresh” food in our mouths).

But with this emerging link between high glucose blood sugar levels and cognitive impairment, I am coming to believe that our fast-food, “meal-in-a-box,” highly-processed foods diet combined with little-to-no regular exercise is a significant contributor as well.

Americans, especially, have some of the most atrocious eating habits in the world. Eating real meals at appropriate times during the day has all but disappeared and, in a lot of homes, eating has become whatever, whenever, and results in being the equivalent of nonstop snacking.

I’m always amazed at how much we eat out and don’t cook at home. I’m equally surprised that when we do cook at home, it’s not really cooking, but taking a box, can, or bag of something prepackaged and heating it up.

We have grown to really like the taste of processed food, fast food, and restaurant food and we don’t like the taste of home-grown food and foods made from scratch. The fast food, restaurant food, and processed food industries have made sure that we prefer their food to real food by making it high fat, high carbohydrate, and even high sugar.

McDonald’s, for instance, uses a simple sugar, dextrose, to give its french fries their unique and – I may the only person on the planet who has eschewed McDonald’s food all my life – for most people, addictive flavor .  

Check your pantry, refrigerator, freezer, and cabinets right now and see how many of the processed foods in there have a form of sugar (dextrose is a common one) added. Remember that the listing order of ingredients on food packages is from most used to least used.

big-vegetable-garden-lgWhile our grandparents or great-grandparents had gardens and fruit trees, raised chickens and/or beef cattle (or had a neighbor who did), and worked more laborious jobs to earn a living and then spent a lot of time working laboriously at home (cleaning houses, mowing lawns with a push mower and tilling, planting, harvesting, and preserving the produce they grew), we modern westerners grow very little of our own food, preferring the boxes, cans, and bags of food at the grocery store and buy hormone and antibiotic-filled chicken and beef in super WalMarts after our 10-12 hour days mainly sitting in an office staring at a computer screen.

When we do get home, if we haven’t hired a lawn maintenance service, then no matter how small the yard, we jump on a riding lawn mower video-gamesand cut the grass in a few easy sweeps. A fair number of us pay someone to clean our houses. Our other time at home is mostly spent in sedentary activities in front of computer screens, video games, and TVs.

So in many ways, although I don’t at all discount genetic factors and a very toxic planet, we westerners have adapted a diet and exercise lifestyle that very likely  could be contributing to the earlier and exploding rise in cognitive impairment and decline.

As with all diseases, there are many factors out of our control, but what we eat and whether we exercise are two factors we have complete control over. When I consider everything outside of my control working against me, then I undertake very seriously anything that is within my control.

Does that mean, if I live long enough, I won’t suffer with dementias push-lawn-mowerand/or Alzheimer’s Disease? Frankly, the odds are against me – as they are against you – with these diseases.

However, how I personally to choose to eat and exercise all my life may have a great impact on how long it takes and how bad it becomes. It may not, but I’d rather err on the side of caution.

I steadfastly believe that because Mama ate healthily all her life and exercised every day, even in little, short, slow increments throughout the day, with my guidance, almost up to her death, the worst of her symptoms were in only the last two years of her life.

So, what will you do differently, starting right now, with the things in life – and your lifestyle – that are in your control?

The Stressor of Physical Health in Caregiving for Our Loved Ones Suffering With Dementias and Alzheimer’s Disease

This will be the last post in this series about the role that stress plays in our loved ones suffering with dementias and Alzheimer’s Disease

We’ve discussed some of the most common sources of stress for our loved ones, including unmet needs, physical environment and routine, as well as communication, vision, and hearing.

This post will talk about how physical health – both preexisting conditions and and conditions that arise concurrently with or as a result stress-the-way-it-looksof cognitive impairment and neurological damage – can be one of the most continuous and more serious sources of stress for both us as caregivers and for our loved ones who are suffering with Alzheimer’s Disease and dementias.

All disruptions in physical health cause stress for all of us. Even a simple cold in those of us who are physically and mentally healthy causes stress because it interrupts our lives, slows down our lives, and may negatively impact our lives.

A common example for a lot of people is that if you don’t get paid medical leave at work and you can’t be at work because you’re sick, then you don’t get paid, so you have less income that paycheck. Quite frankly, that’s why so many of us just suck it up and go to work anyway unless we’re on the precipice of dying (and that’s a bit of humor, so please take it that way!) and why the entire office ends up getting colds.

The weaker immune systems in the office may end with upper respiratory infections and even pneumonia because we couldn’t afford the stress of having less money in our paycheck. That’s the current reality in the United States in a lot of companies.

So if we realize how much stress illnesses and health problems cause in us, then we understand how the stressor of physical health problems in our loved ones suffering with dementias and Alzheimer’s Disease is exacerbated by the neurological impairment and decline.

Except for early onset dementia or early onset Alzheimer’s Disease (younger than 65 years of age when symptoms start), most of our loved ones are well on their way in the physical aging of their bodies and their bodies are wearing out.

Heart problems are probably the most common physical health condition that our elderly loved ones face. Heart problems can manifest themselves as anything from hypertension (high blood pressure)  and atrial fibrillation (AFib) to malfunctioning valves, blocked arteries, and congestive heart failure

High blood pressure is an interesting health stressor to look at because it can be a contributor to vascular dementia developing, yet high blood pressure is related to stress (it is actually the result of constricted arteries, so the heart has to pump harder to keep blood flow going), so this stressor is really a two-edged sword for our loved ones suffering with dementias and Alzheimer’s Disease. Stress causes blood pressure to rise and high blood pressure causes stress – and damage – to the heart and to the brain.

However, high blood pressure poses a third risk – and stressor – healthwise. As our loved ones age, high blood pressure becomes more difficult to manage medically, so often multiple types of medications are used, including statins, beta blockers, and diuretics, and some of these – especially long-term use of diuretics to pull fluid off the heart and extremities – have detrimental effects on kidney function and can lead to kidney failure.

Atrial fibrillation can be corrected in its early stages with some medications (with a lot of risks) and later with a pacemaker. However, when looking at a surgical option for our loved ones suffering from dementias and Alzheimer’s Disease, we must always consider that going under general anesthesia will always result in further cognitive decline and impairment. And that will be a post-surgical source of more stress for our loved ones.

Heart-DiseaseDefective heart valves and blocked or constricted arteries will create stress for our loved ones in many ways. First, there is physical pain associated with these conditions and pain is a stressor. There is also a decreased flow of oxygen, so breathing will become more difficult. If you’ve ever had a hard time catching your breath (or suffered from respiratory problems like asthma), you know how stressful not being able to breathe can be.

But the decreased flow of oxygen also means less oxygen to the brain, which can make cognitive impairment even more pronounced, no matter where our loved ones suffering with dementias and Alzheimer’s Disease are in the course of their journeys, which is another source of stress.

I would strongly urge caregivers of loved ones who also suffer from heart problems to get their loved ones’ oxygen saturation levels tested. A continuous oxygen saturation level below 90 means that the body and the brain is not getting enough oxygen (you will find that these levels go extremely low during sleep).

Oxygen is available for home (or care facility) use and will help dramatically. A doctor has to prescribe it, but the saturation test results will make that easy. And a home health equipment company will deliver the equipment.

oxygen-concentratorWe used a non-tank oxygen concentrator for Mama at home and I had a portable version with a battery pack to take with us when we went out. I kept the portable oxygen concentrator charged all the time in case we lost power because I didn’t want oxygen tanks in our house (true confession: the oxygen tanks really made me nervous and I was terrified they were going to explode and kill us both and that was the only other no-electricity alternative).

Whether to surgically treat defective heart valves and blocked or constricted arteries is again a matter of weighing the overall risks with the overall benefits. 

Although I strongly advise against general anesthesia  with our loved ones with neurological damage and cognitive impairment, there are other surgical options that may be available to treat some of these conditions that do not require putting our loved ones all the way under anesthesia.

For example, my mom had congestive heart failure the last three years of her life, so we were both always on high alert for signs of it reaching an acute (full) stage and I got very good at knowing when we needed to do something, medication-wise, to get the fluid off her heart to prevent possible pneumonia and heart failure.

Five and a half months before Mama died, on a Friday afternoon in March (her birthday), Mama started sweating profusely and complaining of pain and nausea. I immediately started doing a medical inventory with her and trying to ascertain where the pain was and what, if anything, we could do at home to alleviate it.

When Mama vomited the first time, I asked if she wanted to go to the hospital, and she said she didn’t, but asked if I could help her over to the couch to lie down and sleep because she thought that might make her feel better.

Mama slept for about an hour with me hovering, wiping the beads of sweat off her forehead, wondering if I was doing the right thing by letting her decide to go the hospital or stay home. We’d already made the decision that she would not go back to the hospital for her heart problems, but instead would treat those at home under her doctor’s guidance.

I don’t know how I knew, but I knew this wasn’t a heart issue, but I didn’t know what else it could be. When Mama awoke from her nap, she groaned with pain and I managed to get a trash can over to her before she vomited again.

I put my hand over her heart and asked if that hurt there and Mama shook her head. I put my hand on her stomach and asked if it hurt there. Mama shook her head again. I knew she’d had her appendix out when she was 19 or 20, so I didn’t bother with her left lower side. I put my hand on her right side just below her ribs and she cried out and vomited again.

I told Mama we needed to go to the hospital and she agreed with me that time. After several hours in the ER, with pain and anti-nausea medication helping Mama with the physical symptoms, the tests the doctor had run showed that Mama had a gall bladder infection. We had to transfer at about 2 am that Saturday morning to a surgical hospital to deal with that.

The gastrointestinal (GI) doctor who came in around 6:30 am that Saturday morning told us that Mama needed her gallbladder removed. Without even worrying about the cognitive effects of general anesthesia, I knew Mama’s heart wasn’t strong enough to survive it.

I told the GI doctor that wasn’t an option because of her heart and I could visibly see the “whatever” look on his face when he very disdainfully told both of us that he could put a drain into to remove the infection under twilight anesthesia, and I’d have to take care of it for six weeks, but it wouldn’t remove the problem and we’d have to do it again within a year.

I knew the odds of us having to do it again before Mama died were slim to none, so Mama and I talked about it and we agreed to the drain. The procedure was scheduled for Sunday morning.

On Sunday morning, a nurse brought surgery paperwork into Mama’s room early for me to sign. I told her “no surgery” and I refused to sign the paperwork until the GI doctor changed it to the procedure for putting in the drain.

And even though we chose the least affecting method for Mama to do something that had to be done, it caused a lot of stress for Mama (both the procedure and the six weeks the drain was in) and it negatively affected her cognition dramatically for several weeks (she finally stabilized with a little improvement by the third week in April).

When we got home, I immediately revised Mama’s diet to include foods that would help her gallbladder and remove foods that might lead to another infection. I tried to keep a lot of fat out of our diets anyway, but I also knew that Mama had a limited amount of life left, so I indulged her love for ice cream every evening for dessert after dinner and when she told me one day she wanted “a hamburger at that place we used to go to,” I let her splurge on a Five Guys burger with the works and french fries.

But the stress of Mama’s physical health problems never fully went away after that. Even though she recovered beautifully from the gallbladder infection, the congestive heart failure was gaining ground and she was in pain with her heart frequently.

And that would increase her levels of stress, alternately making her worried – about me and the “burden” she thought she was to me (I always reassured her that she was not a burden to me and I wouldn’t be anywhere else doing anything else because I loved her) – and agitated about things. 

My struggle – and our struggle as caregivers for our loved ones with dementias and Alzheimer’s Diseases along with other physical health problems – was not to let Mama’s stress get me stressed out.

Most of the time, I did pretty well managing my own stress in front of her.

But there were plenty of times where, even though Mama didn’t know it, my own stress levels from wanting to make sure she was comfortable and not in pain and that I was doing everything right and my own knowledge that the end was close even though I didn’t know what that would look like were extremely high and sustained.

Truth be told, I don’t really think even now, a year and a half after her death, my sustained stress levels have gone down. It’s seems as though I just traded one kind of stress for other – and, in my opinion, worse – kinds of stress.

(I often wonder if this is just the new normal for me. And how the effects, if I live long enough – although I hope I don’t because I don’t want to be a burden to anyone – will play out for me. I plead with God every day to end my life before I outlive my body and my brain.)

One other type of physical health stressors that are common to our loved ones with dementias and Alzheimer’s Disease are the cognitive impairment-related health issues. The two most common are pneumonia and urinary tract infections.

Pneumonia is many times listed as the cause of death in our loved ones with dementias and Alzheimer’s Disease. This is because as neurological damage increases, having trouble chewing and swallowing (automatic reflexes controlled by the brain) causes choking (a stress mechanism) and food gets aspirated into the lungs, causing infection.

Urinary tract infections can be very common in our loved ones as well. A lack of hydration can be one cause, while improper hygiene can be another cause. However, both can, at the same time, be causes. Urinary tract infections are treatable with antibiotics, so it’s imperative to start those as soon as symptoms appears.

One of the most common symptoms of a urinary tract infection in our loved ones with dementias and Alzheimer’s Disease is a sudden and sharp cognitive decline marked by profound confusion, extreme agitation, and sometimes physically aggressive behavior (a stress mechanism) where there was none before.

So, if we as caregivers observe this in our loved ones, we need to seek immediate medical treatment for them, either by home health nurses or by going to the ER.

This concludes this series on stressors and how they affect our loved ones with cognitive impairment and neurological damage. I hope it’s been informative.

I plan on doing another series in the future on some of the ways we – who are still healthy mentally and physically – can reduce or eliminate the potential stressors others might face if we get terminally ill (these are terminal illnesses) or we die.