Early Changes In The Brain May Occur Decades Before The First Symptoms Of Alzheimer’s Disease Begin To Show.

Does Alzheimer’s disease pathology accumulate in our brains in our younger years without making us symptomatic?

Typically, individuals don’t get evaluated for Alzheimer’s disease (AD) or Mild Cognitive Impairment (MCI) unless they begin to notice a change in their memory or start to have other concerning symptoms that cue them that something may be going on with their brain health.

Research indicates that a decade or more before symptoms of MCI or AD appear, the neuropathological mechanisms associated with the development of Alzheimer’s disease may have already begun.

A recent study was done to evaluate changepoints in a range of biomarkers during preclinical (non-symptomatic) Alzheimer’s disease. Four measures were evaluated in this study including cerebrospinal fluid (CSF), magnetic resonance imaging (MRI), and cognitive testing. The study examined whether these measures had a significant change in relation to the onset of symptoms. The data was drawn from the BIOCARD study conducted at the National Institutes of Health (NIH) and Johns Hopkins University.

The study was made up of 306 cognitively normal individuals. A subset of these individuals progressed to the prodromal (symptomatic) phase of Alzheimer’s disease also called MCI. Approximately 75% of these participants had a first degree relative with AD.

The CSF measures analyzed the biomarkers  Abeta 42, the most toxic form of Abeta, total tau (t-tau), and phosphorylatedtau (p-tau, which make up the tangles in the brain). The MRI measures analyzed the entorhinal cortex, hippocampus, and the amygdala in the brain. The comprehensive neuropsychological battery tested all of the major cognitive domains including memory, executive function, language, visuospatial ability, attention, processing speed, and psychomotor speed. These were completed at baseline and at the onset of symptoms to examine the time association between performances.

Using a changepoint analysis determined whether any of the measures discussed above had a significant changepoint in relation to the onset of clinical AD or MCI symptoms.

Photo: Schematic representation of the changepoint model

All of the measures that were studied had significant changepoints, and all of them preceded the onset of symptoms. The changepoint for CSF t-tau occurred 34 years prior to symptom onset. Although this changepoint appears to be associated with the onset of Alzheimer’s disease symptoms, it does not necessarily correspond to an early effect. All of the cognitive tests had changepoints 10-15 years prior to symptom onset, as well as the remaining CSF measures. The timing of these changepoints varied.

The study results provide a credible indication that a change in the biomarker occurs some number of years before clinical onset. However, an accurate prediction of the timing cannot be made due to the variability between individual experiences. The image below shows the change in hippocampal volume on MRI, and function on PET scan,in a patient with MCI over just a year.

We can expect to see further research in this area in the future due to the fact that it is challenging to  identify biomarker changepoints during the preclinical phase of Alzheimer’s disease.

Younes L, Albert M, Moghekar A, Soldan A, Pettigrew C, Miller M. Identifying Changepoints in Biomarkers During the Preclinical Phase of AD. 2018;
Google Images. Google; [cited 2019Jun19]. Available from: https://images.google.com/

Thelma’s Place, Winner of the Brodsky Innovation Grant!

Each year the Alzheimer’s Foundation of America awards a $25,000 grant to a nonprofit organization to help fund new programs or services within the community. To be considered for the Brodsky Innovation Grant the proposed program must seek to improve the lives of individuals living with Alzheimer’s disease and their families. It must also demonstrate creativity and uniqueness, fulfill a great need in the community, and demonstrate the potential to be replicated.

In 2018 Thelma’s Place in Canby, Oregon, received this grant to create The Garden of Life, an Intergenerational Sensory Garden. This garden has been designed to create an enriching, educational environment for both individuals with Alzheimer’s disease and pre-school aged children.

Gardens provide safe opportunities for interaction and relaxation between seniors and children. The intergenerational Sensory Garden at Thelma’s Place is an interactive experience that allows those with Alzheimer’s disease and children to stimulate their minds together, be creative and have fun. Having a space like this available allows individuals with Alzheimer’s disease to feel empowered, improve self-esteem and positively impact their overall well-being.

Those who visit the Sensory Garden can experience increased connectedness, renewed purpose for living, enhanced feelings of self worth, improved behaviors, an opportunity to laugh and the unconditional love with children who are in need of an enhanced sense of belonging, empathy and development.

The Garden of Life is comprised of different stations that are each intended to produce various results. Stations include a Sound Garden, Exploration Garden, Tasting Garden, and an Observation Garden. These stations allow for creative expression, stress release, imagination and much more.

Thelma’s place is a non-profit organization in the community that provides breaks for caregivers to re-energize while their loved one visits the day center to participate in daily activities that are specially designed for those with memory loss. Day trips and activities such as visiting places within the community and nearby areas are also planned for those who attend the day center. Whether a person has just been diagnosed with a memory condition, is coping with Alzheimer’ daily, or experiencing memory problems of any kind; all are welcome at Thelma’s Place.

Caregivers are able to take time for themselves and also attend support groups and education related to being a caregiver, while their loved ones participate and enjoy the daily activities that Thelma’s Place has to offer.

Here is a great video about Thelma’s Place!

Alzheimer’s Foundation of America Chooses Thelma’s Place, of Canby, Oregon, as National Winner of its Brodsky Innovation Grant [Internet]. Alzheimer’s Foundation of America. 2018 [cited 2019Jun10]. Available from: https://alzfdn.org/alzheimers-foundation-america-chooses-thelmas-place-canby-oregon-national-winner-brodsky-innovation-grant/
Home [Internet]. Thelma’s Place. [cited 2019Jun10]. Available from: http://thelmasplace.org/
Rosen C. Thelma’s Place wins $25,000 innovation grant [Internet]. https://joomlakave.com. 2018 [cited 2019Jun10]. Available from: https://pamplinmedia.com/cby/147-news/401831-298212-thelmas-place-wins-25000-innovation-grant-

What Is The AFA and What Do They Do?

The Alzheimer’s Foundation of America is an organization that provides support and education to those living with Alzheimer’s disease, as well as, their caregivers and families. The AFA also helps to fund research on improved treatments in the hope of finding a cure for Alzheimer’s disease.

The AFA website offers a National Toll-Free Helpline. This resource is available 7 days a week and is staffed by licensed social workers. The neat thing about this help line is that, although they are based out of New York, they are also able to connect callers with local resources in their area throughout the United States. There are multiple ways to access this help line. You can call the number, 866-232-8484, or they offer Live Chat, Skype, and Email options as well.

Telephone Support Groups are also offered for caregivers and are led by licensed social workers. This option allows for those who can’t always make it to local in-person group meetings or those with busy schedules to receive the support they need.

Fact Sheets are available on the AFA website and cover a wide range of topics such as what to do after being diagnosed, sleep tips, tips for traveling, tips for talking about memory changes, incontinence, fall prevention, eating tips and much more.

Webinars are held frequently and discuss topics surrounding Alzheimer’s disease. These can be accessed later if you cannot attend during the scheduled time.

The Alzheimer’s Foundation of America also has a National Memory Screening Program. Memory screens are essential to early diagnosis of Alzheimer’s disease. They may also help diagnose other conditions that cause memory problems. Although we are still looking for a cure for Alzheimer’s disease, other conditions that cause memory problems may be treatable such as vitamin deficiencies or thyroid problems.

These free memory screens are provided across the United States. Screening sites near you can be found by clicking here. Your doctor may also provide memory screens, so be sure to ask them for more information.

The AFA is currently running their Educating America Tour and will be making a stop in Portland, OR on June 11th, 2019! This conference is free to attend and open to the public.

The conference will be held from 9:00am-1:30pm at the Oregon Museum of Science and Industry located at 1945 SE Water Avenue, Portland, OR 97214.

Center for Cognitive Health’s own Dr. Michael Mega is the keynote speaker at this event and will be giving a talk titled Unraveling Alzheimer’s. Dr. Mega will provide an overview of Alzheimer’s disease, an update on Alzheimer’s research and clinical trials, and what we can expect on the horizon.

The conference is offering additional workshops and free, confidential memory screens.

The other workshop topics include:

  • Preparing for and Understanding Long Term Care
  • Creating Innovative Intergenerational Programming and Therapeutics

The free memory screens done at this conference are a great resource that can provide insight on whether or not a follow-up is needed for further testing and evaluation. The earlier that memory changes can be identified, the better. Results from these screenings will be available for you to add to your medical records. There are 4 tests involved in the screenings and will be done in a private, one-on-one setting with trained test administrators. It is very important to remember that these tests are not used to diagnose any medical conditions. An official diagnosis needs to be given by your doctor.

If you are unsure whether or not you should have a memory screen, Here is a link to some questions that might help you decide. 

Hope to see you there!

Alzheimer’s Foundation of America [Internet]. Alzheimer’s Foundation of America. [cited 2019Jun4]. Available from: https://alzfdn.org/

Normal Aging vs. Early Alzheimer’s Disease

How can we tell the difference between normal age related memory symptoms and early Alzheimer’s disease symptoms?

It is important to note that not everyone will experience the same symptoms. What may be normal for one person may not be normal for another. Generally speaking, normal age-related cognitive decline is subtle and mostly affects thinking speed or the ability to pay attention. 

That being said, sometimes it’s hard to decide if you should be concerned about the memory changes you are experiencing.

The Alzheimer’s Association lists 10 warning signs and symptoms that you should be on the lookout for.

#1. Memory Loss

Normal Aging: This is the main complaint that aging individuals have. If you are experiencing normal aging you may still forget information such as someone’s name or what time you have an appointment, but you will eventually remember it later.

Early Symptom: If you are forgetting information and asking for that same information over and over, heavily relying on reminders from technology, family, or friends, you may be experiencing memory problems that are more severe than normal aging that could be a sign of Alzheimer’s. The main distinction to make here is whether or not your memory complaints are interfering with and disrupting your daily life.

#2. Changes in Problem Solving or Planning

Normal Aging: Making small mistakes from time to time, such as an error balancing your checkbook or forgetting an ingredient in a recipe while cooking is considered to be normal aging. Sometimes the ability to react or think things through will be a bit slower, and it may be easier to become distracted.

Early Symptom: If you have a harder time keeping track of monthly bills, following recipes from start to finish, working with numbers, counting change, calculating a tip, or creating and following plans, you may be experiencing early symptoms of Alzheimer’s disease. Here, the ability to concentrate will be very difficult.

#3. Difficulty With Tasks That Are Familiar At Work, Home, or Leisure

Normal Aging: During normal aging you may need help figuring out settings on appliances or understanding how to use newer technologies, but you are still able to complete your daily tasks despite these difficulties.

Early Symptom: If you are experiencing difficulties in these areas that keep you from completing your daily tasks, you may be experiencing early symptoms of Alzheimer’s. This could include forgetting how to get somewhere that you visit frequently, remembering the rules of a game you like to play, or having trouble completing your duties at work that you didn’t struggle with previously.

#4. Confusion With Time or Place

Normal Aging: Time Flies! It is normal to occasionally forget the date or day of the week, as long as you are able to remember it or figure it out later. It is also common to go into a room and forget the reason for going there, but remembering again shortly after.

Early Symptom: People who are developing Alzheimer’s typically forget dates and seasons and have a hard time recognizing the passage of time. If you are getting lost or don’t know where you are in a place that is familiar to you, this is a sign of something more severe than normal aging. There will also be a struggle with time-relationships when discussing life events. In this stage, the person is not likely to figure out the day of the week or what season it is later on because they don’t realize that they never knew it to begin with.

#5. Visuospatial Problems

Normal Aging: It is normal for your eyes to age along with the rest of your body. Things like cataracts, misty or cloudy vision, or changes in your eyesight strength contribute to the way you see images or perceive spatial relationships. These would be considered normal aging events.

Early Symptom: It is not normal when you are experiencing difficulties interpreting visual information such as reading, driving, and judging distances between things. These may be indications that something more concerning is going on.

#6. Trouble Speaking or Writing Words

Normal Aging: It is normal to struggle to find the right word sometimes. We all do it. As we age we may also have more difficulty keeping up with a conversation and find that we need to concentrate harder in order to participate. If too many people are speaking at once, it may be easy to lose track of the conversation.

Early Symptom: If you notice a change in your ability to hold a conversation with someone, finding the correct word for something, or forgetting what you’re talking about in the middle of speaking, this may be a sign that you’re developing early symptoms of Alzheimer’s.

#7. Losing Items and Not Being Able To Find Them

Normal Aging: In normal aging we may set something down and forget later where we left the item, but we have the ability to think back and retrace our steps to find the lost item.

Early Symptom: In early Alzheimer’s you may lose something, but not be able to find it again. You may even start leaving things in unusual places that they don’t necessary belong. Over time this will start to occur more frequently.

#8. Changes in Judgment

Normal Aging: We all make bad choices from time to time throughout life. We learn from these mistakes and recognize that it may not have been the best choice or action.

Early Symptom: When your ability to make appropriate decisions or assess risks begins to decrease, you may be showing early signs of Alzheimer’s. Making bad choices frequently such as giving large sums of money to telemarketers or getting involved in pyramid schemes are common examples of changes in judgment.

#9. Abandoning Social Activities or Work

Normal Aging: Hesitating before going to a social gathering or function is to be expected. As you get older, social engagements can be tiring.

Early Symptom: A person who is experiencing early symptoms of Alzheimer’s will start to abandon, lose interest or withdraw from hobbies, work responsibilities, or social gatherings altogether. This could be due to the changes they are experiencing, or they may be forgetting that they enjoy the activity.

#10. Mood and Personality Changes

Normal Aging: Being irritated when someone or something disrupts your daily routine is common. Normally, you are irritated briefly, work through it and move on. It is also normal aging to feel a bit anxious or weary about social or family obligations.

Early Symptom: If you are having early Alzheimer’s symptoms, you may have drastic changes in feeling suspicious, confused, angry, sad, anxious and uncomfortable. Typically, you may easily become upset over little things. You may pace or wander away from an unfamiliar situation, and odd behaviors will begin to emerge.

*Make sure not to try and self diagnose after reading through these symptoms. If you have concerns that you may be showing early signs of Alzheimer’s disease, discuss what you are experiencing and feeling with your doctor.

Being aware of these 10 warning signs and symptoms will help you, or your loved one, be proactive with care related to Alzheimer’s disease.

10 Early Signs and Symptoms of Alzheimer’s [Internet]. Alzheimer’s Disease and Dementia. [cited 2019May29]. Available from: https://www.alz.org/alzheimers-dementia/10_signs
Healthy Aging [Internet]. Memory and Aging Center. [cited 2019May29]. Available from: https://memory.ucsf.edu/symptoms/healthy-aging
Normal ageing vs dementia [Internet]. Alzheimer’s Society. [cited 2019May29]. Available from: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/normal-ageing-vs-dementia

Sleep and Alzheimer’s Disease

Sleep problems and disorders are relatively common among seniors. Many individuals with a neurodegenerative disease complain of experiencing  insomnia, excessive daytime sleepiness, or abnormal motor activity while they are sleeping. [3]

Research shows that adults should be sleeping 7 or more hours per night on a regular basis, give or take an hour depending on the individual. The sleeping brain uses almost as much energy as the awake brain. Certain hormones are only secreted while we sleep, problems can be solved during sleep, and memories are consolidated. [1] Although people find ways and excuses for functioning on less sleep, there is really no substitute for sleep itself. The brain needs this time to clear neurotoxins and maintain optimal health

Neurodegenerative diseases such as Alzheimer’s and Parkinson’s disease can damage the regions of the brain that control sleep, making insomnia and disrupted sleep two prominent features of these disorders. [2] Sleep disruptions can also be a side effect of medications.  

Circadian rhythm disorders can also contribute to sleep disruption and the development of sleep disorders. People with Alzheimer’s disease and circadian rhythm disorders tend to have prolonged wakefulness at night and sleepiness and naps during the day. [2] Bright light therapy can be used to help synchronize the person’s internal clock to help improve sleep patterns and quality.

REM sleep behavior disorder is often diagnosed in those with Alzheimer’s, Parkinson’s, and Lewy Body disease. Normally when we enter REM sleep, dreaming begins and the body is paralyzed so that we do not act out our dreams.  For those who have REM sleep behavior disorder, dreaming is disrupted, and paralysis does not occur so they act out their dreams.  Safety Precautions should be implemented if someone is experiencing REM sleep behavior disorder because they may get out of bed, walk around, thrash or flail their limbs; some people even eat in their sleep. [3] Here are some safely precautions to consider when dealing with REM sleep behavior disorder. [2]

  • Remove furniture with sharp edges and other sharp objects from the sleeping area
  • Remove any weapons that may be stored in or near the sleeping area
  • Move the bed away from windows
  • Use heavy curtains or drapes
  • Place the mattress on the floor of the bedroom
  • Put soft padding on any hard surfaces near the bed
  • Sleep in separate beds to avoid injury
  • Consider adding a bed alarm to wake up the person or partner

Caring for someone with sleep disruptions or disorders affects the quality and quantity of sleep that the caregiver is getting nightly. If caregivers do not get enough sleep there is a high chance of burnout and health decline.

Remember these basic tips to promote healthy sleep hygiene habits!

  • Pick a schedule and stick to it
  • Stay active during the day
  • Get some Vitamin D
  • Don’t drink anything right before bed
  • Take a bath before bed
  • Convert your bedroom into a sleep sanctuary

Sweet Dreams! 

[1] Basner M. Sleep and Neurocognitive Performance . Practical Neurology. 2019;57–9.
[2] Malhotra RK. Sleep and Neurodegenerative Disease. Practical Neurology. 2019;37–40.
[3] Sleep and Aging – Senior Sleep Guide [Internet]. Tuck Sleep. [cited 2019May16]. Available from: https://www.tuck.com/sleep-aging/

Does Periodontal Bacteria Cause Alzheimer’s Disease?

We have been taught the importance of brushing our teeth since childhood, but could maintaining healthy oral hygiene protect us from getting Alzheimer’s disease? The human mouth is home to at least six billion bacteria! [2]

A recent study published in Science Advances claims that the oral pathogen Porphyromonas gingivalis can travel from the mouth to the brain, where it may instigate Alzheimer’s disease. They have found that people with Alzheimer’s disease have higher levels of the bacterial protease gingipain in their brain tissue, which is produced by the bacterium P. gingivalis. They also found that the brains of people with Alzheimer’s disease contain traces of gum bacteria that may initiate or aggravate Alzheimer’s disease pathology. [1] See the full publication here.

The study suggests that once in the brain, the P. gingivalis bacteria releases toxic proteins, gingipains, that have been shown to destroy neurons and cause other signature signs of Alzheimer’s disease in the brain in animal studies. Once the brain is infected, the brain’s natural defenses gather around the infected cells causing the inflammation and buildup of plaques associated with Alzheimer’s disease.[4]

What is Porphyromonas gingivalis?

P. gingivalis is most commonly associated with degenerative gum disease. In the U.S., periodontal disease affects one-half of the population over 30 years of age and is the major cause of tooth loss among adults. [6] Studies show that older people with periodontal disease have an increased risk of Alzheimer’s disease and cognitive decline, however, it remains unclear whether poor hygiene and gum disease lead to dementia. [1]

How do I improve my oral health?

It has been noted that establishing and maintaining good oral health habits throughout life is imperative. The damage of the P.gingivalis bacterium is done over a lifetime, not just in later life or after the onset of Alzheimer’s disease. Paying extra attention to your oral health can protect you, not only from Alzheimer’s disease, but from other health conditions including diabetes, coronary artery disease, heart attack, and stroke. Below you will find some basic oral health tips to improve or maintain your oral health! 

More research in this area?

Since the publishing of the initial research findings in January 2019, The GAIN Trial, a phase 2/3 trial sponsored by Cortexyme Inc, is just being put into motion. The trial began in April 2019, and is looking to treat more than 500 participants diagnosed with mild to moderate Alzheimer’s disease. Treatment with the study drug will last for one year. P.gingivalis levels will be measured in these participants before starting treatment, as well as, after treatment. Participants cognitive abilities will also be measured before, throughout, and after the study. More information about Cortexyme can be found here. The GAIN Trial website can be found here

[1] An Antimicrobial Approach to Treating Alzheimer’s? [Internet]. ALZFORUM. [cited 2019May14]. Available from: https://www.alzforum.org/news/research-news/antimicrobial-approach-treating-alzheimers
[2] Porphyromonas gingivalis in Alzheimer’s disease brains: Evidence for disease causation and treatment with small-molecule inhibitors [Internet]. Science Advances. Available from: https://advances.sciencemag.org/content/advances/5/1/eaau3333.full.pdf
[3] Cortexyme, Inc [Internet]. Cortexyme, Inc. [cited 2019May14]. Available from: https://www.cortexyme.com/
[4] GAIN Alzheimer’s Clinical Trial [Internet]. GAIN Study. [cited 2019May14]. Available from: https://gaintrial.com/
[5] Photo :Top 10 Dental Hygiene Tips [Internet]. Oswal Dental Clinic. 2016 [cited 2019May14]. Available from: http://www.oswaldentalclinic.com/top-10-dental-hygiene-tips/
[6] How KY, Song KP, Chan KG. Porphyromonas gingivalis: An Overview of Periodontopathic Pathogen below the Gum Line. Frontiers in Microbiology. 2016;7.

Clinical Trial Myths vs Facts

Clinical trials tend to have a cloud of negative talk hovering over them. Participating in something that involves your health can be daunting and scary, and unfortunately, this fear has led to some misconceptions about participating in clinical research trials.

Here are some of the common Myths/Facts surrounding clinical trial participation:

Myth: Clinical trials are dangerous.

Fact: There will always be risks associated with medical research when testing new and unproven treatment options. Uncomfortable side effects may occur. However, clinical trials are federally regulated and there are ethical and legal codes that apply to each study. If you are considering participating it is important to discuss risks and benefits with your doctor. All studies are voluntary and participants can withdraw at any time.

Myth: The quality of care is not as good as the care I currently receive with my doctor.

Fact: Clinical trial participants receive a high level of care and are highly monitored for any side effects that may occur. All participants are able to discuss any areas of concern with the study staff, and the participants primary care provider may also be involved. For some living with Alzheimer’s disease, research shows that they do better while participating in clinical trials.

Myth: Clinical trials will not accept me as a participant because I have another disease or condition.

Fact: Other chronic medical conditions may be present along with Alzheimer’s disease, and some clinical trials may be designed to accommodate this. Each study has its own inclusion and exclusion criteria. When discussing participation during the informed consent process, be sure to let the study team know of any medical conditions that are present. 

Myth: If clinical trials are so important, my doctor will encourage me to participate.

Fact: There are hundreds of clinical research studies being done across the country. Your physician may not be aware of which of these studies are in your area, or which studies you may be eligible to participate in. Be sure to discuss any clinical trial opportunities you find with your doctor.

Myth: Clinical trials are not confidential.

Fact: When you enroll in a study there are pieces of personal information that will need to be collected and shared with the study team and study sponsor. This generally includes date of birth, medical history, any results collected throughout the study etc. This information is kept confidential to an extent which means that it is given a blinded number to protect your identity throughout the study. Although your information is shared with the study sponsor and FDA, it is our highest priority to maintain our participants information and dignity.

Myth: The study site/team knows who is actually getting the drug.

Fact: In randomized clinical trials there is a group receiving a placebo and a group receiving the study drug. Neither participants nor study team is aware of which participant is receiving a placebo or not. This information is not released until the closing of each study. Make sure that you are okay with the potential chance of getting a placebo when considering participation in a clinical trial.

Myth: The drugs being tested in clinical trials haven’t been tested on humans yet, I’d just be a “guinea pig.”

Fact: The drugs tested in clinical trials have been researched and evaluated multiple times before they can be used in a clinical trial.

Myth: Clinical Trials don’t work.

Fact: Clinical trials are needed to find safe and effective new treatments for various medical conditions. Some trials show more success than others, but not all trials are failures.

Here are two videos that may be helpful when considering a clinical trial. Clinical Trials.gov also has a helpful page with Questions To Ask, and the Alzheimer’s Association has a page discussing How Clinical Trials Work.

10 Misconceptions About Clinical Trials Debunked [Internet]. Rox Medical. 2018 [cited 2019Apr29]. Available from: https://www.roxmedical.com/news/10-clinical-trial-misconceptions/
Clinical Trials: Myths vs. Facts [Internet]. Alzheimer’s Disease and Dementia. [cited 2019Apr29]. Available from: https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials/myths-vs-facts
How Clinical Trials Work [Internet]. Alzheimer’s Disease and Dementia. [cited 2019Apr29]. Available from: https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials/how-trials-work
Learn About Clinical Studies [Internet]. ClinicalTrials.gov. [cited 2019Apr29]. Available from: https://clinicaltrials.gov/ct2/about-studies/learn



Tips and Resources For Caregivers

According to the Alzheimer’s Association, 16.1 million Americans provide unpaid care for people with Alzheimer’s disease or other dementias, resulting in an estimated 18.4 billion hours of care.

While being a caregiver is gratifying, it is also associated with physical, psychological, and financial burdens. It is common for caregivers to report a decline in their own health while caring for another, and it compromises their ability to be a reliable and effective caregiver. Many caregivers report having less time for family and friends, experiencing increased emotional stress, and decreased self-care. Self-care includes maintaining healthy dietary, exercise, mental health, and sleep habits. [1]

It is important that caregivers receive support and develop a system that allows them to tend to their own mental and physical health. Caregivers need to take breaks, monitor their own health, practice self-care, and seek out a support group or similar resource when needed. The stress associated with being a caregiver can result in depression and anxiety.

The Caregiver Action Network (CAN) states:

  • Family caregivers who provide care 36 hours or more weekly are more likely than non-caregivers to experience symptoms of depression and anxiety.
  • Spouses providing care experience symptoms of depression or anxiety at a rate of six times higher than non-caregivers.
  • Family caregivers caring for a parent experience symptoms of depression or anxiety at a rate that is twice as high as non-caregivers.

 The CAN provides resources to monitor caregiver depression including a caregiver depression test, found here.

There are many online resources that give caregivers access to informational video resources, discussion forums, helpful checklists, safety tips and more. Every person’s experience with Alzheimer’s disease is unique and different, but having basic resources available to turn to can provide comfort and help reduce stress.

I’d like to share two main resources. The first being The Caregiver Action Network (CAN), a non-profit organization mentioned earlier. Their site offers a caregiver toolbox loaded with helpful tips, as well as, access to an online care community, video and story library, ways to cope with Alzheimer’s disease etc.

 CAN offers information for any caregiver, not just those caring for someone with Alzheimer’s disease. The website primarily focuses on Alzheimer’s, Huntington’s, Parkinson’s, and COPD. Their website can be accessed here. 

The second great resource I’d like to mention is the Alzheimer’s Association. Their website provides information and educational material for those living with Alzheimer’s, caregivers, and volunteers. The Alzheimer’s Association offers many support groups for those with Alzheimer’s as well as their caregivers. To find support groups in your area click this link. 

Additional support can be found via the National Institute on Aging and the Family Caregiver Council. 

[1] Collins, Lauren & Swartz, Kristine. (2011). Caregiver Care. American family physician. 83. 1309-17.
[2] Depression Test [Internet]. Screening 2 Supports. [cited 2019Apr19]. Available from: https://screening.mentalhealthamerica.net/screening-tools/depression?ref=CAN
[3] Home [Internet]. Caregiver Action Network. [cited 2019Apr19]. Available from: https://caregiveraction.org/

IDEAS Study Results

The Imaging Dementia-Evidence for Amyloid Scanning (IDEAS) Study was a 12 month, observational, open-label, longitudinal study done from February 2016 to December 2017. This study was done to assess the impact of amyloid PET scans on patient outcomes. An amyloid PET scan of the brain can identify underlying Alzheimer’s disease even in people with no cognitive complaints. The study was made up of 18,848 participants who were referred by qualified dementia specialists and met inclusion criteria specific to this study, including mild cognitive impairment or mild dementia.

The study hypothesized that, in diagnostically uncertain cases, knowledge of amyloid status as determined by a positive amyloid PET will lead to significant changes in patient management, and that this will translate into improved long-term outcomes.

What did the study find?

The press release announcing the IDEAS Study publication states that the study revealed that providing clinicians with the results of PET scans that identify amyloid plaques in the brain changed medical management – including the use of medications and counseling – in nearly two-thirds of cases. The study also showed that amyloid PET scans altered the diagnosis of the cause of cognitive impairment in more than one in three study participants.

The Alzheimer’s Association chief science officer and co-author of the study, Dr. Maria C. Carrillo, PhD, stated that these study results, “Present highly credible, large-scale evidence that amyloid PET imaging can be a powerful tool to improve the accuracy of Alzheimer’s diagnosis and lead to better medical management, especially in difficult-to-diagnose cases.”

The Center for Medicare & Medicaid Services’ (CMS) wanted to find out if it would be worthwhile to reimburse for amyloid PET scans. These scans are very expensive and not covered by Medicare or health insurance plans, making them inaccessible to those who might benefit from them. For the cost to be covered by CMS, it must be demonstrated that the patient outcomes are affected by the result of a scan. It is unclear if the results from this study will help persuade the CMS on this matter.

A second phase of the IDEAS Study recently ended in February 2019, however, it may take up to a year to be published. Conducting another IDEAS Study in the future with a more diverse study population and to address other gaps in the previous study is also being discussed.

For more information about the IDEAS Study visit the following links:

If you are interested in other biomedical research, visit JAMA’s website.

Results from IDEAS Study Published [Internet]. ALZFORUM. [cited 2019Apr16]. Available from: https://www.alzforum.org/news/research-news/results-ideas-study-published
DanThemes. [Internet]. The IDEAS Study – Brain amyloid imaging in Alzheimer’s disease. [cited 2019Apr16]. Available from: https://www.ideas-study.org/about/educational-resources/the-ideas-study-brain-amyloid-imaging-in-alzheimers-disease/
Imaging Dementia-Evidence for Amyloid Scanning (IDEAS) Study – Full Text View [Internet]. Imaging Dementia-Evidence for Amyloid Scanning (IDEAS) Study – Full Text View – ClinicalTrials.gov. [cited 2019Apr16]. Available from: https://clinicaltrials.gov/ct2/show/NCT02420756?term=IDEAS&cond=Alzheimer Disease&cntry=US&rank=3

Hobbies, Are They Really That Important?

Many of us are stretched for time and lead busy lifestyles. By the time we reach the end of our day, the idea of sitting in front of the TV seems very appealing.

However, there could be a more proactive and beneficial use of our time! It may seem like we don’t have time for hobbies, but hobbies that are developed or maintained early on in our lives may help us stave off the symptoms of Alzheimer’s disease or other dementias.

Hobbies may protect our brain. An article in Psychology Today states that engaging in a hobby at least one hour per day may protect against Alzheimer’s later in life. Hobbies may also help improve your function as you age. A 2016 study found that those without hobbies or a perceived purpose in life have a significantly higher risk of not only mortality, but also a decline in activities of daily living [6].

Not only can a hobby keep your cognitive abilities strong, it can also have positive effects on your mood. Hobbies are fun and enjoyable. They can provide comfort, reduce the risk of depression, increase socialization, and even improve physical health.  Art  based hobbies provide a chance for self-expression and a chance to process reactions to emotions and ideas. An article exploring the link between painting and dementia states that, “Artistic production itself is a complex cognitive behavior involving at least vision, praxis, memory, and executive functions: this list does not even consider the kind of emotional processing and inspirations that might give birth to such art” [1]. A 2011 study states that art therapy has been reported to improve attention, interest,  joy, self-respect, and quality of life in those with dementia [3]. The National Institute on Aging states that engaging in creative activities can improve creativity, memory, and problem solving skills. Some art related hobbies include drawing, painting, collage, knitting, weaving, coloring, do it yourself (DIY) projects, and woodworking.

If you are reading this and currently don’t practice any hobbies, don’t fret! New hobbies can always be learned and will help stimulate your brain. Starting a new hobby can help you acquire new skills that may serve you later in life. Remember to stay socially active as well. Interacting with others is very important and even provides an opportunity to share your hobbies with others. Here is a list of possible hobbies: playing cards, gardening, swimming, yoga, photography, caring for a pet, or volunteering. The Alzheimer’s Association says that physical activities increase blood and oxygen flow to the brain and improve brain health. Walking is a great physical hobby!

 If you or your loved one is currently diagnosed with Alzheimer’s disease or a form of dementia, hobbies can help increase a sense of purpose in life and overall quality of life throughout the stages of the disease. Alzheimer’s patients without daily hobbies may experience a faster progression of symptoms or  worsening cognitive function. Many hobbies can be even adapted to be more enjoyable for those with dementia as their symptoms worsen. Cooking can serve as a hobby, as well as, encourage socialization and interaction with others. Indulging in your loved ones hobbies can help them better deal with the loss of their cognitive abilities. If you are a caregiver to a loved one with Alzheimer’s, click on this link for some Tips to Help a Person With Dementia Make An Activity Fun. The repetitive aspect that hobbies provide helps those with Alzheimer’s continue to do things that bring them joy. An article in the American Journal on Aging [7] states that, “Hobbies help people to identify and recognize remaining abilities; they communicate information to others, and reflect personality and family background. Hobbies also are cultural activities connecting a person with their background, and to the larger community.”

[1] Cipriani, G., Cipriani, L., Danti, S., Picchi, L., & Fiorino, M. D. (2019). Links Between Painting and Neurology: The Example of Dementia. American Journal of Alzheimers Disease & Other Dementias®,153331751982629. doi:10.1177/1533317519826293
[2] Duan, Y., Lu, L., Chen, J., Wu, C., Liang, J., Zheng, Y., . . . Tang, C. (2018). Psychosocial interventions for Alzheimer’s disease cognitive symptoms: A Bayesian network meta-analysis. BMC Geriatrics,18(1). doi:10.1186/s12877-018-0864-6
[3] Hattori, H., Hattori, C., Hokao, C., Mizushima, K., & Mase, T. (2011). Controlled study on the cognitive and psychological effect of coloring and drawing in mild Alzheimers disease patients. Geriatrics & Gerontology International,11(4), 431-437. doi:10.1111/j.1447-0594.2011.00698.x
[4] How Hobbies Impact Your Head and Your Heart. (n.d.). Retrieved from https://www.psychologytoday.com/us/blog/debunking-myths-the-mind/201706/how-hobbies-impact-your-head-and-your-heart
[5] How to Help a Person With Dementia Continue to Enjoy Their Hobbies. (2018, July 20). Retrieved from https://www.alzheimers.net/help-a-person-with-dementia-continue-to-enjoy-their-hobbies/
[6] Tomioka, K., Kurumatani, N., & Hosoi, H. (2016). Relationship of Having Hobbies and a Purpose in Life With Mortality, Activities of Daily Living, and Instrumental Activities of Daily Living Among Community-Dwelling Elderly Adults. Journal of Epidemiology,26(7), 361-370. doi:10.2188/jea.je20150153
[7] Yatczak, Jayne. “The Power of Ritual and Hobbies: Engaging in Favorite Pastimes Can Help People with Dementia .(Viewpoint Essay).” Generations (San Francisco, California), vol. 35, no. 3, 2011, pp. 71–73.