My grandmother passed away last year, after suffering from dementia for more than two decades. I often visited my grandparents in Florida when I was younger. Even in elementary school, I remember my confusion and frustration with my grandmother’s oft-repeated questions, mistakes, and repetitive behaviors. She’d ask me how long I was staying three times in a row; she’d leave little post-it notes all over the house with the most obvious reminders; she’d feed the dogs a dozen times a day, well past the point of obesity. I didn’t understand what was happening at the time, but later I learned that she had early-onset Alzheimer’s disease. The doctors eventually attributed her mental decline, at least in part, to an incident that occurred in her twenties while working as a docent at the Mark Twain house. One day during her shift, she fell down a flight of stairs and went into a coma for several weeks. When she woke up, she seemed fine. It wasn’t until her late fifties that she began to experience increasing confusion and lapses in her memory.
Over the two decades that I knew her, my grandmother became more and more forgetful until eventually she couldn’t remember her grandchildren, children, or even her husband. After many, many years of being a full-time caretaker and cardiologist, my grandfather eventually made the difficult decision to commit her to a long-term care facility. He’d expected to grow old with her, but eventually he found the physical and mental challenges of caring for her to be too great for him to handle alone. Despite how difficult life must have been for my grandmother, especially in her final years, she remained lovely through the very end. She had a smile and a kind word for everyone, even when her life became utterly incomprehensible.
It’s now known that the brain changes that cause cognitive decline and dementia typically begin years, if not decades, before people show symptoms. This finding suggests that a window of opportunity may exist to prevent or slow the onset of dementia or age-related cognitive decline. Scientists have not yet found a cure for these diseases, but they’ve made enormous progress over the past decades in understanding the causes, risk factors, symptoms, and outcomes associated with dementia.
Dementia, technically called “major neurocognitive disorder” is not a specific disease, but rather a term used to describe a set of symptoms associated with memory impairment, cognitive decline, and an inability to perform everyday activities. Symptoms of dementia sometimes even present themselves in reversible conditions such as thyroid problems and vitamin deficiencies. Dementia is caused by damage to the brain cells that interferes with their ability to communicate with one another. Different regions of the brain are responsible for different functions; thus, particular types of brain cell damage in particular regions of the brain are associated with different types of dementia. The Alzheimer’s Association defines 13 different types of dementia:
- Alzheimer’s Disease
- Vascular Dementia
- Parkinson’s Disease Dementia
- Dementia with Lewy Bodies
- Wernicke-Korsakoff Syndrome
- Creutzfeldt-Jakob Disease (sometimes called Mad Cow Disease)
- Frontotemporal Dementia (Pick’s Disease)
- Huntington’s Disease (Huntington’s Chorea)
- HIV/AIDS Dementia
- Fatal Familial Insomnia
- Mixed Dementia
- Chronic Traumatic Encephalopathy/Brain Injury
- Normal Pressure Hydrocephalus
While there aren’t tests that can definitively diagnose a type of dementia, or even dementia in general, there are a couple of key symptoms that may indicate the presence of the disease. Cognitive impairments are central to the diagnosis of dementia and can be divided into five broad domains. At least two of the following functions must be significantly impaired for a patient to be diagnosed with dementia:
- Executive Function (reasoning and judgment)
- Communication and Language
- Visuospatial abilities
- Personality and Behavior (ability to focus and pay attention)
In addition, a person suffering from dementia may experience difficulties that are:
- A marked decline from their prior level of ability
- Bad enough to affect day-to-day function, such as work and family responsibilities
- Not due to a reversible condition: including hypothyroidism, depression, and medication side effects
- Aren’t better accounted for by another mental disorder: including depression or schizophrenia
Because of the numerous ways in which dementia can first appear in a patient, a doctor must base a dementia diagnosis on a person’s in-depth medical history, their physical exam, lab tests, cognitive and behavioral assessments, and relational reports. Typically, doctors can accurately diagnose dementia, although determining the exact type of dementia that a person suffers from is far more difficult, as the symptoms and brain changes that accompany each disease often overlap.
Alzheimer’s disease is the most common cause of dementia, accounting for 60 to 80 percent of cases. The disease is caused by an overabundance of brain plaques (misfolded amyloid protein) and tangles (protein tubes) inside and outside the brain cells that disrupt communication between these cells and interfere with brain health. Once only visible at autopsy, scientists can now identify the plaques and tangles that signify Alzheimer's disease in the brains of living people. The hippocampus, the region of the brain that is the center of learning and memory, is often the first to be damaged by Alzheimer’s disease. Hence, memory loss typically presents itself as one of the earliest signs of the disease.
Many types of dementia are progressive, with symptoms that start slowly and worsen over time. My grandmother, who had Alzheimer’s, experienced a progressive loss of function, particularly in terms of forming new memories and maintaining the ability to reason and problem solve.
The primary risk factor for dementia is age, but the following can also raise a person’s chances of developing one of the diseases:
- Cerebrovascular disease: including subclinical and clinical strokes, small vessel disease, large vessel disease, microbleeds, and white matter hyperintensities
- Cardiovascular risk factors: including obesity, hypertension, high insulin levels, and diabetes
- Metabolic disease
- Environmental exposures to toxins early in life - such as air pollution)
- Insufficient physical activity/sedentary behavior
- Low educational attainment
- Stress and elevated levels of cortisol
- Atrophy of the hippocampus
- Hyperlipidemia - particularly hypercholesterolemia
- Chronic inflammation
- Sleep disturbances: including difficult falling or staying asleep, fragmented sleep, sleep-disordered breathing, circadian rhythm disturbances, sleep apnea, and rapid eye movement sleep disorder
- Social isolation and loneliness
- Drug and alcohol abuse
- Use of therapeutic drugs: including tacrolimus, cyclosporine A, and some chemotherapeutic agents such as methotrexate
- Artificially sweetened sodas
- Olfactory dysfunction
- Race: African Americans, Hispanics
- Gender: women
- Persistent or chronic pain
- Disorders and mutations: including Jalisco genetic mutation, prion disorders, Progressive supranuclear palsy, neurodegenerative disorder, tauopathy, and corticobasal degeneration
- Genetics: including the e4 form of the APOE gene (Alzheimer’s), and alterations in the alleles: the complement component (3b/4b) receptor-1 (CR-1), clusterin (CLU), and phosphatidylinositol binding clathrin assembly protein (PICALM)
- Autoimmune diseases, viral infections and bacterial infections: including untreated HIV infections (which can progress into subcortical dementia), viral encephalitis, syphilis, and CNS Whipple's disease
- Certain types of cancer: including breast, testicular germ cell tumors, lung, gastrointestinal, non-Hodgkin lymphoma, small cell lung cancer, thymoma, prostate, adenocarcinoma, and breast adenocarcinoma
- Traumatic brain injuries (Alzheimer’s)
- Impaired insight, unwillingness to discuss changes in the body, and delayed diagnosis of the disease
- Dietary deficiencies: including low Omega-3 fatty acid intake, low antioxidant intake, B vitamin related hyperhomocysteinemia, and trace metals (dietary copper)
There are certain signs to watch out for that may indicate that your loved one is in the early stages of dementia, particularly Alzheimer’s disease. While many people associate these behaviors with typical age-related changes, the difference is in their frequency and severity. An older person may occasionally make a poor decision, while a person with Alzheimer’s may have consistently poor judgment. If you notice any of these symptoms or are worried about recent changes in your loved one’s behavior, schedule an appointment with your loved one’s physician as soon as possible:
- Changes in short-term memory: Changes in a person’s memory may be revealed in subtle ways, such as forgetting recently learned information, forgetting events from the recent past, forgetting important dates or events, asking the same questions over and over, or increasingly relying upon memory aids.
- Difficulty planning or solving problems: A person may struggle to develop and follow through on plans that they make in everyday life. They may not be able to adapt to unexpected situations or may increasingly rely on a loved one to make decisions or answer questions that they previously would have handled themselves.
- Difficulty completing normal tasks at home, work, or at leisure: A person may struggle to balance a checkbook, play a game with many rules, focus on reading a book, or cook a meal from a recipe.
- Changes in behavior or mood that persist for at least six months: A person may become uncharacteristically sad, irritable, anxious, rude, suspicious, or depressed.
- Apathy: A person may lose interest in the activities that they once used to enjoy, or no longer want to spend time with friends and family. This disinterest may result in withdrawal from social situations.
- Decreased or poor judgment, including a lack of social judgment: A person may fall for telemarketing scams, display erratic spending habits, or make uncomfortable comments that depart from their usual personality.
- Difficulty finding the right words or slowed conversational abilities
- Confusion: A person may misplace their possessions, forget their schedule, or struggle to remember someone they’ve previously met.
- Difficulty following storyline
- Declining sense of direction: A person may not remember familiar landmarks, regular directions, or where they live. They may get lost in familiar places, misplace things, or lose the ability to retrace their steps.
- Repetitious behavior: A person may repeat the same task over and over such as feeding a pet or shaving. They may also repeat the same question or story, word for word, again and again.
- Struggling to adapt to change: A person may fear the changes that they’re experiencing, which may cause them to stick to a routine rather than trying new experiences.
- Lack of personal hygiene: A person may forget to bathe or change clothes, even while insisting that they’re clean.
While there’s no known cure for dementia, there are a variety of treatments that can slow the progression of the disease or mitigate the symptoms. Ultimately, treatment plans vary from person to person based on an individual’s medical history, their presentation of symptoms, and their diagnosis. Listed below are some potential treatments that doctors use in an effort to prevent, delay, or slow dementia. Some of these treatments are still being studied, while others have a solid scientific backing that prove their success in risk reduction or symptom relief:
Medications being studied for the treatment of dementia:
- Drugs targeting amyloid production and amyloid plaque
- Nilotinib: may be able to treat Parkinson’s and Alzheimer's
- Aducanumab: experimental drug that has been tested on a small number of Alzheimer’s patients that has been shown to dramatically reduce the toxic plaques found in the brain
- Anti-tau agents
- Low-dose pioglitazone
- Supplemental vitamins: C, B (B12), pyridoxine, omega-3 fatty acids
- Avoidance of anticholinergic medications, benzodiazepines, sleep aids, and estrogen supplements
- NSAID (for Alzheimer’s)
- Antidepressants: serotonin norepinephrine-reuptake inhibitors: to treat depression in dementia patients
- Antipsychotics: to treat moderate to severe agitation and aggression
- Acetylcholinesterase inhibitors
- NDMA antagonist (Memantine): slightly slows progression of dementia without rebuilding any cognitive abilities
- Souvenaid: evidence for improved memory function in early Alzheimer’s
- Risperidone: to treat the behavioral and psychological symptoms of dementia including apathy, agitation, disinhibition, and sleep disturbance
- Melatonin: to treat sleep disorders
- Cholinesterase inhibitors for Alzheimer's: including Donepezil, Rivastigmine, Galantamine for memory improvement and attention
- Rivastigmine patch: the first line of treatment for the cognitive symptoms in patients with Lewy body disease
While medications may provide relief from the symptoms, as of now, there are no medications proven to change the course of the disease. The National Academy of Sciences in their report “Preventing cognitive decline and dementia: A way forward” determined three classes of interventions that have the strongest scientific backing in their effectiveness to delay or slow dementia:
- Cognitive training: includes a broad set of interventions such as those aimed at enhancing reasoning, memory, and processing speed. These can include games, craft activities, computer use, and social activities.
- Blood pressure management: for people with hypertension to prevent, delay, or slow the progression of Alzheimer’s disease. Treatments include blood pressure medications and lifestyle changes that include diet, weight loss, and exercise.
- Increased physical activity: to delay or slow age-related cognitive decline. Exercise increases blood and oxygen flow to the brain, which may directly benefit brain cells. Activities include walking, aerobic exercise, swimming, and strength training.
In addition to these three classes of interventions, doctors and scientists are studying additional factors that may influence the development and progression of dementia, including:
- Dietary interventions: Currently, the best evidence shows that heart-healthy eating may help protect the brain. Beneficial diets may include the Mediterranean diet (relatively little red meat, lots of whole grains, fruits and vegetables, fish and shellfish, nuts, olive oil and other health fats), the DASH diet, and the MIND diet.
- Increased education and socioeconomic well-being
- Engagement in complex work
- Improvement in treatments for diabetes and heart disease
- Lipid-lowering treatments
- Social engagement
- Sleep quality interventions
- Low/moderate alcohol intake
- Electrical stimulation/deep brain stimulation
- Early detection and treatment of cancer
While there’s still a long way to go in understanding and treating the different types of dementia, scientists have highlighted promising areas to focus on in the future. Future steps include:
- Longer studies that track the slow progression of the disease
- Better designed studies: Randomized Controlled Trials, the “gold standard” of evidence, are currently limited and have significant shortcomings in studying dementia
- Research: priorities include new antidementia treatments that can delay or slow disease progression, diabetes treatment, depression treatment, dietary interventions, lipid-lowering treatment, sleep quality interventions, social engagement interventions, and vitamin B12 plus folic acid supplementation
- Identification of biomarkers for dementia
- Identification of high-risk populations and targeted treatments
- Finding a way to detect Lewy bodies in living brains
- Treatment with (neural) stem cells
- Treatment with cell regeneration
If your loved one suffers from Alzheimer’s disease or another form of dementia, check out the Alzheimer’s Association’s caregiving community or consider joining a support group. Stay tuned in the upcoming weeks for an article about improving the lives of those with dementia, including options like dementia villages, vaudeville, reminiscence therapy, art therapy, music therapy, and occupational therapy. And don’t forget to sign up for Ayuda’s newsletter so that you can always stay up to date on the latest news!