What would you do if your parent became incapacitated and/or was unable to make decisions on their own?
We don’t like to think about the time our parents will no longer be with us and we will need to handle their affairs. However, as people continue to live longer the need to first help an aging parent is a more likely scenario.
Here is the hard part and one which most of us put off: Having a frank discussion about the future with your parent. Talking about it may sound callous or uncaring, but preparing for the eventuality is actually quite the opposite. If you explain to them that they would be helping you they’d feel they were still in control and be more amenable to sharing. They should realize working with you and getting all their legal information together now will make it easier when the time comes when they need your help.
This advice I am giving is through hindsight. I did not sit down with my mother and discuss the possibility of the need for me to make decisions on her behalf. Once Mom began having memory problems I gradually began making many decisions for her. Would it have been easier if we had discussed it before-hand? I don’t know. She still might have resisted but been in a more reasonable state of mind.
I encountered a few problems trying to help my mother during her dementia, which I will share, then I will give my recommendations based on what I learned along the way.
What I did do that made the transition less complicated was that I already had Power of Attorney. A few years before, after my father died, I took Mom to her attorney and she had a new will written and a trust created which named me as a trustee and gave me POA.
A major symptom of dementia is difficulty working with numbers. So it became for my mother. The first task I had to undertake was paying her bills. It did require some convincing, but she eventually realized she needed help.
What did not go as smoothly was when tried to have my mother’s funds consolidated and moved to one bank. It made more sense to combine her savings and there was no need for two checking accounts. At the bank we were shown to the desk of a customer service representative where I explained that we wanted to close my mother’s account, whereupon the representative looked at my mother and asked “Is this what you want to do?” Even though I had already explained the justification to her and thought she understood, Mom answered, “No.” It took several times of my trying to reason with my mother and her saying, “No.” to ultimately convince her. I can understand the bank was trying to protect her, not knowing if I were trying to coerce her into giving me her money. I also encountered this privacy problem many times over the phone talking to different agencies; they always wanted to obtain permission from Mom first and it was hard for them to understand it would be confusing for her.
One of the more important documents I regret not having is the directive for access to her health information. When my mother was given several tests after I had taken her to the emergency room, I went to the hospital the next day to find out the results. I was denied. What I needed was a paper signed by my mother giving me permission to see her health information and/or speak with her doctors. Another option I could have used was to be appointed to be her health proxy which is a more formal authorization and requires notarization. At this time, my mother was often defensive and contrary, and the chance of getting her to sign such a paper were slim.
Another advantage I had in overseeing my mother’s legal effects is that she was very organized, as was my father, who left written notes for my mother, so all of their legal documents and papers were easily accessible. I can imagine how difficult it could be if a parent was both disorganized and confused.
Essential Documents Needed for Eldercare
A will and trust listing who will be acting trustee(s) in their stead
Power of Attorney to make financial decisions
A list of all bank accounts Tip: Have your name put on the account so it will be an easy transition. If possible, combine checking and/or savings so they’re all at one bank.
Deeds to property or loans outstanding
Pension documents, annuity contracts
Utility bills or other bills that are paid on a regular basis Tip: When you take responsibility for payment, call and have them put on auto-pay.
Medicare and supplemental insurance card information Tip:The cards should be available for the parent to have access to the original, so make copies
Health care proxy and/or Hipaa agreement to authorize release of medical information
Medical patient history
List of all medications Tip: This is extremely important because of the affect they may have on your parent; some drugs cause serious side effects on the elderly.
I have found two excellent, free websites that offer resources to help:
theconversationproject.org has downloadable Starter Kits, one which is specifically designed for the loved ones of someone with dementia
eforms.com has forms authorization for someone to receive health information about a patient which are listed by state. It also explains how to obtain health information
In this time of increased political divisiveness and lack of confidence in our congressional representatives to work together and make effective decisions to run the country, finding evidence of compromise on an issue brings hope.
On September 28, 2018 a bill was signed into law that allocated $2.3 billion dollars to be included in the 2019 budget for Alzheimer’s and dementia research under the auspices of the National Institutes of health (NIH) . The congressional members who sponsored the bill included four Republicans, and four Democrats.
Alzheimer’s is indeed the most expensive disease in the country, costing an estimated $277 billion–including $186 billion in direct costs to medicare and medicaid–in 2018. As the number of those afflicted increases, so will the cost. There are 5 million Americans living with Alzheimer’s today; it is predicted this number will rise to 14 million by 2050. With the increase in funding, scientist are able to work at a faster pace to explore ways to reduce risks, develop drugs or other potential treatments to stop or slow the disease.
In 2011 the National Alzheimer’s Project Act (NAPA) was passed which focused on the need for resources for research and the needs of family caregivers with a goal to find effective treatment of Alzheimers/dementia by 2025. Since that time, the federal government has continued to be supportive. The monies allocated to NIH from 2011 to the present have quadrupled, and continue to be spent on research and programs to help caregivers.
Among the many groups that keep congress aware of the need for funding for Alzheimer’s and dementia, one group stands out. Alzheimer’s Impact Movement (AIM), the advocacy arm of the Alzheimer’s Association. The group is very active in keeping our representatives aware of what is needed to help those afflicted with Alzheimer’s and those who care for them, as well and working with government agencies that oversee the research and programs that impact dementia and Alzheimer’s.
AIM federal goals are:
Increase the Commitment to Alzheimer’s Research
Build an Alzheimer’s Public Health Infrastructure
Educate Providers on Palliative and Hospice Care
State policy is also vital to the work that the Alzheimer’s Association is doing to meet the needs of individuals living with Alzheimer’s and their families. State officials determine regulatory and statutory standards for dementia training, control spending on state respite care dollars, designate spending for state long-term care services, and control Medicaid spending which can affect eligibility and scope of benefits – all of which can have a direct effect on families impacted by Alzheimer’s disease.
AIM state goals are:
Implement and update state Alzheimer’s disease plans
Improve dementia training
Increase early detection and diagnosis of Alzheimer’s
Educate the public about risk reduction
Aim was very active in the last election and seeks volunteers on a continuous basis to meet with local representatives, engage on social media, coordinate events, draft ‘letters to the editor’ or assist in other ways to bring awareness to the effects of Alzheimer’s.
To find out more about AIM or learn how you can volunteer go to alzimpact.org
A major discovery has been made in the research of Alzheimer’s disease, as reported in the July 2018 edition of JAMA Neurology. Researchers at Yale University Alzheimer’s Research center have been able to measure the density of neural synapses in living patients. Up until the present, measurement of synaptic density was only possible in brains of people after they died.
Levels of a certain protein, SV2A, found in the transmission of neurotransmitter chemicals from one neuron to another were measured with position emission tomography (PET). The participants with MCI or mild Alzheimer’s disease who were compared to cognitively unimpaired individuals were found to have significantly less SV2A in the neural synapses in the hippocampus indicating a decrease in synaptic binding. The hippocampus is the part of the brain that forms memories, and it has been established that there is a relationship to damage in that area and Alzheimer’s disease.
The PET scan results also correlated with scores on episodic (short term) memory tests as well as those for Alzheimer’s. Other brain imaging tests, though protein was measured, did not offer the correlation with tests for cognition, which is fundamental to the study.
This important breakthrough of a reliable test for synaptic density in living people can provide a better measure of disease progression and help in evaluation of treatment with drugs in clinical trials. Reference: Chen MK, et al. Assessing synaptic density in Alzheimer disease with synaptic vesicle glycoprotein 2A positron emission tomographic imaging. JAMA Neurology 2018 July 16.
A Swedish study that spanned four decades and involved 200 women discovered that those who have high levels of physical activity in middle age are 90% less likely to develop dementia as compared to women who are moderately fit. The women were tested for physical fitness by means of a bicycle test and were monitored and tested for evidence of dementia. They found that the average age for the onset of dementia was 90 for those highly fit and 79 for moderately fit women. Reference: Mind Report.newsmax.com
If that doesn’t make you want to get up and move, this next study will!
Multiple studies have shown that physical exercise helps to protect memory and cognitive function. It can also increase the size of the hippocampus, where memories are created. Research conducted at UCLA explored the impact of sitting and the brain’s hippocampal thickness. After recruiting 35 volunteers they recored how many hours they spent sitting each day the previous week. They then performed MRI scans to measure the medial temporal lobe where new memories are formed. There was a correlation between the number of hours of sedentary behavior and thinning of the lobe. Note: This was a small study and more research needs to be done and variables taken into consideration before general conclusions can be drawn. Reference: Mind Report.newsmax.com
Do you know anyone hard of hearing who doesn’t always wear their hearing aids? They may not want to bother or want to deliberately tune people out. Let them know: Loss of hearing is a significant risk factor for dementia.
Experts don’t know yet what links hearing loss to dementia, but it is suggested that it may be due to the decrease in social interaction. If you don’t understand what is being said and don’t participate fully in conversations, you may lose the benefits that come from that type of mental stimulation. Reference: Alzheimer’s Association
Excellent sites to see what is being done currently in research for dementia and Alzheimer’s and opportunities to participate in clinical trials:
National Institute on Aging www.nia.nih.gov
Bright Focus Foundation www.brightfocus.org
Alzheimer’s Association alz.org
You see your parent or loved one begin to have memory problems: they ask the same questions over and over; can’t remember where they placed something; have difficulty making decisions; forget to pay bills. After administering an informal memory or task test you believe your loved one has dementia. Now what? It is time for a doctor’s opinion.
You don’t need to rush to see a neurologist unless you think the dementia is a result of a recent head trauma. Your primary care doctor or internist, preferably one who is familiar with the patient’s history, should be okay to start. If you are in a position to choose a doctor, try to find someone who specializes in working with older patients. When my mother moved away from her home to live closer to me, I first chose a general practitioner who was near her facility and recommended by others. As her condition worsened, I sought out a geriatric doctor.
What to expect in a medical assessment for dementia:
The first step in a diagnosis is a thorough physical and medical history evaluation. The doctor wants to rule out any conditions that may be related to the onset of dementia. Vision, hearing, cardiovascular, or thyroid disorders can have a direct effect on memory.
The doctor may administer a test to assess memory or simply ask the patient a few questions. After working with aging patients for many years, some doctors are familiar with the responses and behaviors of those exhibiting the signs of dementia and don’t need a detailed analysis.
Blood work will be ordered. The American Academy of Neurology recommends the following evaluation:
Complete bloodcell count
Electrolyte levels in the blood (potassium, sodium and chloride)
Blood levels of glucose, urea nitrogen and creatinine
Blood levels of vitamin B12
Liver and thyroid function tests
Noncontrast computed tomography (CT) or magnetic resonance imaging (MRI)
After gathering all the information about the patient, the doctor can then do an evaluation. First, a determination is made if the dementia is reversible due to conditions such as a brain tumor, depression, vitamin deficiency, hydrocephalus, or toxic reaction to a medication. If these conditions are eliminated as a cause of dementia s/he can then assess the symptoms. Certain diseases, such as Huntington’s Disease or Lewy Body Dementia are accompanied by certain behavioral markers that the doctor can identify, So the absence of these markers points to Alzheimer’s. Even though over 60% of dementia cases end up with Alzheimer’s Disease and the doctor probably suspects this is the case, this process of elimination is crucial so the doctor can decide how to proceed to help the patient.
In many instances a diagnosis of Alzheimer’s is often not given immediately. Instead, the doctor may give the determination of Mild Cognitive Impairment (MCI). This could be called the beginning stage of Alzheimer’s, but there are some people who do not process beyond this stage, however, for the majority, with further cognitive decline, it leads to Alzheimer’s.
With a diagnosis of MCI the doctor may prescribe iron or other vitamins along with an antidepressant. If you have heard of supplements that may decrease the effects of dementia you need to ask the doctor his opinion. Be wary of supplements accompanied by a strong sales pitch. While gingko biloba is heavily touted, research has shown minimal positive results. Current research that shows promise include a mix of Vitamin E, vitamin C, alpha lipoic acid, coenzyme Q10, omega-3 fatty acids, curcumin and Huperzine A.
There are two types of drugs approved by the FDA for use by Alzheimer’s patients. The first, Cholinesterase inhibitors, slow down the breakdown of acetylcholine, an important chemical linked to the formation of new memories. It is sold under the name Aricept, Exelon and Razadyne. The second, NMDA receptor antagonist, helps block the activity of the neuro-transmitter glutamate by binding it to NMDA receptors on brain cells. It is sold under the name Namende, NamendaXR and Namzaric. It should be noted that while these drugs may ease symptoms associated with Alzheimer’s disease, they may only work for a short period of time, and do not halt the disease.
Note: Home-screening tests for Alzheimer are available, but the medical profession and the Alzheimer’s Association strongly do not approve of their use. They do not prove who does not have dementia and can cause undue psychological anguish. There is also a test that those without dementia can request that identifies a APOE gene type that can signal a person is at risk for Alzheimer’s, but again, it is discouraged. There is the possibility that the person may not get the disease, and would spend needless time worrying instead of enjoying life.
How do you prevent dementia or Alzheimer’s? Let me tell you, first of all, there is no magic pill. Doctors and scientists are working very hard to find a cure or identify factors that lead to the condition, but there is no miracle drug or procedure that will stop its progression–so far.
The ‘anti-aging’ tag on a label is a well-used ploy to sell, as are a plethora of products that purport to increase your memory or slow down the aging process. Equally persistent are ads for products with formulas fabricated to increase your mental acuity. Most are based on incidental research and contain plant byproducts or vitamins, some of which are truly essential to good health, but not the panacea they claim. It is always a good idea, though, to check the ingredients, especially those that refer to the brain.
While there is no guarantee that you will develop dementia, there are steps you can take that may decrease your chances. It is not surprising to recognize that the prescription for protecting your brain is the same as maintaining a healthy body.
The Mediterranean diet based on a high intake of fruits and vegetables, whole grains and fats from fish, nuts and olive and vegetable oils has been found to slow cognitive decline.
• In longitudinal studies those who followed the Mediterranean diet performed better on cognitive tests and than the control group, and were able to cut their risk for Alzheimer’s disease by half.
• A study commissioned by the National Institute on aging found that people who consumed fish once or more per week had a 60% lower risk of developing Alzheimer’s disease as compared to those who did not.
• High intake of fruits and vegetables, rich in free radical-fighting antioxidants, help prevent oxidative damage to the brain. Inflammation and damage from these free radicals most likely play a part in brain changes usually found in those with Alzheimer’s disease.
• Use of olive oil, and eating fish rich in monounsaturated fats and omega-3, help quell inflammation throughout the body, including the brain.
• Yes, it’s true, dark chocolate is good for your brain. In a study cited in the May 2016 edition of Appetite, participants were given a battery of tests that assessed cognitive function and then compared the scores with the amount of chocolate they typically ate weekly. The results showed that the cognitive scores rose with the amount of chocolate consumed.
Vitamins and Minerals
If you eat a varied diet you should get most of the vitamins and minerals you need. In older adults it is important that they receive enough of the following:
Vitamin D: 600I U ages 50-70; 800 IU over age 70; not to exceed 4,000 IU
Vitamin B6: Men 1.7 mg a day; Women 1.5 mg a day
Vitamin B12: 2.4 mcg a day
Folate: 400 mcg a day
Calcium: Women 51 and older 1,200 mg a day; Men 51-70 1,00 mg a day; Men 71 and older 1,200 mg a day
Reference:Office of Dietary Supplements National Institutes of Health www.ods.od.nih.gov
Physical activity is needed for an over-all healthy body, but it is also essential to keep an adequate amount of blood flowing to the brain.
• Regular exercise promotes better mental functioning by improving cerebral blood flow which aids in the prevention of cognitive decline. It also has the added benefit of releasing endorphins which make you feel better mentally.
• 75 minutes of intense physical activity or 150 minutes of moderate physical activity a week is recommended. This does not always mean you must go to the gym. Participating in a sport or walking several times a week is as effective.
• Not surprisingly, a high BMI (body weight index) increases your chance to develop dementia, especially vascular dementia or Alzheimer’s. Research on people in midlife, shows that for someone with a BMI between 25 and 29.9 the chance for dementia increases twofold, and for the obese person (BMI greater than 30) chances for dementia are four times greater. This could be a more powerful motivator than losing weight for a slimmer profile!
Getting a good night’s rest is very important.
• Doctors recommend six to seven hours of sleep a night for good mental functioning. This can be a real concern as we grow older and our sleep patterns change. It is not unusual for seniors to have problems getting to sleep or waking often at night.
• Certain studies have shown that participants who reported less that six hours of sleep a night, on average, and described their sleep as restless, had a greater buildup of plaque in the body than those who had a longer, restful sleep.
• Sleep is when our brain consolidates and firms up new information. During this deep sleep, slow-brain-wave period, short term memories are transported from the hippocampus to the prefrontal cortex for long term storage. This probably explains why staying up most of the night to cram for a final wasn’t a good idea!
• There are many effective, natural ways to improve your sleep; however, precautions must be taken with the use of sleeping pills. The American Geriatrics Society (AGS) recommends against the use of sedatives such as diazepam (Valium), lorazepam (Ativan), alprazolam (Xanax) for the treatment of insomnia in older adults because of the risk of interruption of the sleep cycle and risk of cognitive impairment. Short term memory loss has also been associated with antihistamines (Benadryl) found in some sleep aides such as Tylenol PM.
Stress takes a heavy toll on the body.
• High levels of stress cause the release of cortisol. Research has found when cortisol levels rise, cognitive performance declines. It is thought that chronic stress leads to malfunctions in the brain pathway that regulates cortisol levels and in turn affects brain cells.
• Studies conducted on treatment of high blood pressure appeared to offer a side benefit. The Journal of Hypertension, June 2013, reported that medication for high blood pressure not only reduces a risk for stroke or heart attack, but may also help to prevent dementia, especially vascular dementia.
• There are many ways to reduce stress, among them exercise and meditation, but ultimately it needs to be something tailored to the individual.
• Smoking and excessive consumption of alcohol to relieve stress would, obviously, not be wise choices. An alcoholic drink a day, especially red wine, however, not only may help the heart but increase blood flow to the brain and prevent small strokes.
Mental Stimulation and Social Engagement
Keeping mentally active and socially engaged supports mental health and ultimately your brain cells.
• Reading, playing board games, puzzles, dancing, playing a musical instrument or pursuing a hobby are ways to keep active which have been shown to lessen the chance for dementia. A five-year study of seniors 75 or older who kept active and mentally stimulated were found to be less likely to develop dementia compared to a control group.
• A Mayo Clinic study looked at inactivity by comparing the time spent watching television. They found that participants who spent an average of more than seven hours of TV a day were more likely to suffer memory loss than those who watched less.
• There are commercial products on the market, principally computer programs that are promoted to stimulate mental acuity; research has shown, so far no notable differences between these programs and self selected activities such as games, puzzles, etc.
• Talking with and interacting with people is also important for good mental health. It keeps the brain stimulated and your memory stronger.
Another significant way you can help yourself is to not stress about what may or may not happen in the future and keep a positive attitude.
References: John Hopkins White Papers Memory: Your annual guide to alzheimer’s disease and dementia, Peter Rabins,M.D. M.P.H. and Scientific American Memory:Your annual guide to prevention, diagnosis and treatment and treatment, Peter V. Rabins, M.D.
Two questions that most people ask when they want to know more about dementia and Alzheimer’s disease are:
What are the causes?
Is there anything you can do to to prevent it?
Scientists and doctors who study dementia and Alzheimer’s are battling with these same questions daily. While they have learned a great deal about how dementia affects the brain and have developed ways to test for it, such as MRI scans and spinal taps which check for markers of certain proteins, the only definitive diagnoses is through autopsy.
To understand what researchers have discovered in the brains of those affected, we first need to look at the memory system of the brain. Only then can we see the connection of what is happening in the brain and what we observe in those affected with dementia.
Scientists have identified four memory systems that process information for storage and retrieval: Episodic, Semantic, Procedural, and Working Memory. Though memory may involve more than one part of the brain for action or retrieval, there is one section of the brain that is primarily responsible for each system.
Episodic memory is directed by the hippocampus and is in charge of remembering new information and recent events. This is usually the first part of the brain affected and the problem we first take note of in the dementia patient. Thankfully, memories of past events are not affected which is why patients often talk as if they are younger or have conversed with a deceased relative.
Semantic memory takes place in the cortex and is the one we worry about when we have a “senior moment.” It involves storage and retrieval of facts such as the Months in a year, naming and describing a common object, and categorizing objects.
Procedural Memory is located in the cerebellum and enables us to learn activities and skills that will allow us to perform them automatically, such as driving or playing an instrument. Not only can there be loss of previously learned tasks, but those afflicted have difficulty learning new skills.
Working memory, commandeered by the prefrontal cortex, governs the ability to concentrate and pay attention and enables us to temporarily keep needed information in mind like directions to a restaurant. When this part of the brain is affected it is hard to concentrate and learn a multistep task.
All memories are made when neurons in the brain communicate with one another by sending electrical signals via axons which release neurotransmitters. This path from neuron to neuron imbeds a memory. The gap between the neurons is called a synapse.
The brain contains about 100 billion neurons. Few neurons die over a person’s lifetime, but they do shrink. Others are disabled by damaging molecules called free radicals. This is probably why mental functioning slows in middle and older age. Over time, these changes can make it more difficult for an older person to learn new tasks or retrieve information from memory, such as someone’s name. These changes, though, are not disabling as occurs with dementia.
Events that are associated with emotion are more easily recalled. What you were doing on Nov 22, 1964? Sept 11, 2001? This memory-emotion association may also explain why sometimes thoughts about a negative event in our life stay with us longer; people can’t let go when they feel they have been wronged.
Most of my information was taken from Memory by Peter V. Rabins, M.D., M.P.H. Scientific American: Consumer Health, 2017 edition.
Since my main focus of this blog will be on dementia we first need a clear definition of what it means. According to the New World Dictionary the psychiatric definition is “the loss or impairment of mental powers due to organic causes.” People with dementia have significantly impaired intellectual functioning that interferes with normal activities and relationships.
When I told people my mother was suffering from Dementia, they often said, “Oh Alzheimer’s.”, however, the two words are not synonymous. Dementia is a term used for a collection of symptoms which are caused by injury or disease to the brain. Alzheimer’s is a disease.
While it is true that the great majority of those with the symptoms of dementia may develop Alzheimers disease, it is only one kind. Other diseases that exhibit its symptoms are vascular dementia, Lewy body dementia, frontotemporal dementia, Hunington’s disease, and Creutzfelt-Jacob disease. Dementia symptoms also can occur in those whose brain has been affected by injury or drugs.
In the beginning my mother had what is called Mild Cognitive Impairment (MCI) which is early dementia. She had trouble with tasks that required reasoning, and could not remember what was said in conversations. She was able to live independently at first, but gradually her symptoms worsened. It is at this juncture that conflicts occur. Though the family realizes their loved one needs help, the person with dementia is usually not ready to give up his/her independence. And so, the caregiver challenge begins!
Here are some signs common to dementia
Loss of communication skills
Disorientation to time and place
Gait, motor, and balance problems
Hallucinations, paranoia, agitation
Someone with dementia symptoms may
repeatedly ask the same questions
become lost or disoriented in familiar places
be unable to follow directions
be disoriented about the date or time of day
not recognize or be confused about familiar people
have difficulty with routine tasks such as paying the bills
neglect personal safety, hygiene, and nutrition
According to the US National Institutes of Health:National Institute of Neurological Disorders and Stroke Although it is commom in very elderly individuals, dementia is not a normal part of the aging process.