Dementia Patient Advocate, Navigator or Health Advocate
The concept of patient advocacy in its current form was developed in 1950’s as the treatment of patients grew more and more technically complicated, as a means to make the voice of the patient more readily heard. In today’s world of constantly evolving medical techniques, treatments, and services, the average individual cannot be expected to be thoroughly acquainted with any and all this material. So it becomes the function of the dementia patient advocate to perform a variety of services to ease the burden of the patient, and their family, as they learn to deal with every aspect of the disease.
The primary concern of the dementia advocate is the support of the patient in all aspects of life with the disease, whether they be physical, emotional, or financial. An advocate can assist the patient in investigating available treatment options and educating the patient on the efficacy of each of them, be it pharmacological or surgical. By educating the patient, the advocate can be of great assistance in helping them make an informed decision about their course of action, and the possible side effects and outcomes. Support may also involve recommending counseling services for the patient, and their family members, to help them cope from day to day. Dementia patient advocates may also be of assistance in helping the patient, and their caregivers, deal with any physical debilitation resulting from the disease, and its treatment.
Another aspect of dementia patient advocacy is assistance in navigating the financial aspects of treating the disease. An advocate can act as a liaison between the patient and his or her insurance company, assuring that the patient receives any and all benefits to which they are entitled. When one is dealing with a serious disease, it is quite easy to lose track of other aspects of your life. An advocate can help to seek out sources of assistance which can ease the financial burden of the patient.
Education is also a major function of a health advocate. Both the patient, and their caregivers, are often in need of information about how the disease will affect their lives, both during its progression, and in its aftermath. Patients must be informed about how their condition will affect their mobility, the ability to care for themselves, and if they will be left with any permanent impairment to their lifestyle. Caregivers need to be instructed in mechanisms, or techniques they must use to cope with the patient’s daily care, such as injections, proper care of surgical dressings, etc.
The patient, above everything else, needs to know that there is someone in their corner. Someone who will help them find their way through the confusing, and sometimes daunting, world of modern medicine. Someone who will have their best interests in mind as they face challenges presented every day in their struggle to find, secure, and finance the best treatment available.
What is Dementia?
Dementia is a collection of many brain disorders that affect both cognitive and psychological functions. The pathology involves affection of brain cell in a way that reduces their oxygen or energy supply. For this reason, some scientists think of it as a kind of ‘type 3 diabetes’ of the brain. Dementia has a negative impact in a person’s personal and social abilities. There are many types of this disorder but the commonest are:
· Alzheimer’s disease dementia. This is the commonest of all.
· Vascular dementia. This follows an obvious or a silent stroke.
· Dementia with Lewy Bodies.
· Parkinson’s disease.
· Mixed dementia.
· Fronto-temporal dementia (FTD).
· Huntington’s disease.
· Creutzfeldt-Jacob Disease.
· Normal pressure hydrocephalus which is water accumulation in the brain.
· Wernicke-Korsakoff syndrome which is a vitamin B1 (Thiamine) deficiency mostly seen in alcoholics.
· Traumatic brain injury. This is seen in boxers, footballers and other people who get recurrent knocks and blows to the head in their occupation. Examples include soldiers.
· There are diseases caused by bacteria or by viruses that present with dementia like symptoms. These diseases are meningitis, syphilis, Lyme disease, malaria and others. These diseases are treatable and therefore the dementia they cause is reversible.
Symptoms of dementia depend on the type and the stage of the disease. Most of the symptoms are similar. Some of these symptoms include:
· Loss of memory.
· Poor organization.
· Impaired ability to work.
· Confusion states.
· Deteriorating speaking and writing ability.
· Inability to retrace a route or an event.
· Poor judgement.
· Mood changes from depression to excessive excitability and even aggression.
· Poor decision making.
· Inability to recognize sounds.
· Poor walking gait with a tendency to fall easily.
· Low attention span.
· Loss of interest in things previously enjoyed.
· Abnormal sleep patterns – either too much or too little.
· Acting out dreams.
· Hallucinations and delusions.
· Mental blankness.
· Spastic muscles.
· May have loss of personal and social inhibitions.
A specialist can assess the dominant symptoms and decide the type of dementia it is.
Causes and Risk Factors
The cause is not clear. However the environment in combination with other factors can increase the risk of getting dementia. These risks are:
· Age. Possibility of getting dementia increases with age.
· Family history of the disease.
· Occupation. Boxers, footballers and soldiers are at an increased risk due to repeated knocks to their heads.
· Down’s syndrome.
· Atherosclerosis (fatty plaques clogging blood vessels) reduces supply of blood to the brain and so can trigger symptoms.
· Abnormal blood pressures – either too low or too high.
· High circulating estrogens.
· High low density lipoproteins (LDL) – bad cholesterol.
· High homocysteine.
· Poor education. Apparently the less you use your brain the higher the chances of developing dementia.
The mainstay of diagnosis is a thorough clinical assessment by specialists who will work together. This may involve physicians, psychologists, psychiatrists and others. Specific tests include:
· Cognitive and neuro-psychological tests.
· Neurological evaluation tests.
· Mental assessment by psychiatrists.
· CT scans and MRI may be useful in ruling out other medical conditions but not in confirming dementia per se.
· Laboratory tests include thyroid function tests and others to rule out metabolic or infective conditions.
Treating dementia is a teamwork effort that will involve different medical specialists, the family and the concerned person. It may also mean adjusting lifestyle, occupation and environment. Exercises are also said to improve symptoms.
Drugs are used to improve the symptoms. Some of these are cholinesterase inhibitors like Rivastigmine and Galantamine. These drugs can be combined with Memantine for better results.
U.S. Statistics for Dementia
1:8 people of those above 65 years of age have Alzheimer’s disease. About 50% of those above 85 have the disease.
In 2014, there were 5.2 million Americans living with Alzheimer’s disease.
The disorder is the fifth cause of death in the country.
Risk of women getting the disease is 1:6 while that of men is 1:11
Alzheimer’s disease and other types of dementia cost the tax payer about 200 billion dollars in 2012 alone. This is projected to hit 1:1 trillion dollars by the year 2050.
With proper care, dementia people can lead a relatively normal life.