A True Individualized and Comprehensive Model of Dementia Care At Home
Dementia Care | San Francisco
Every 70 seconds, somebody in the U.S. is diagnosed with Alzheimer's disease, the most common form of dementia. Approximately 5.3 million Americans have Alzheimer's. If nothing is done to reverse current trends, we will have a projected 11-16 million Alzheimer's patients by 2050, according to a new report by the Alzheimer's Association.
What is Dementia? A general definition
Dementia is a general term used to describe problems with memory and thinking, which leads to a decline in social skills and behavior and indicates that something is wrong with the brain. The medical community defines dementia as the significant loss of intellectual abilities, such as memory capacity, severe enough to interfere with social or occupational functioning.
Did you know that, while Alzheimer's Disease is the most common cause of dementia, there are more than 70 other causes of memory loss — many of which are treatable? Also, memory loss falls along a continuum - meaning that many people with memory loss can still engage with productive and meaningful activities, participate with their loved ones, enjoy music, theater and the arts and taste great food!
The truth is that receiving a diagnosis of dementia can be devastating... Fears include: What if anybody knows? Who will take care of me? How will I look after my family? When will I lose my legal rights? Does this mean that I will be in an institution? What will happen to me?
These fears prevent many people from getting an accurate assessment of their memory and cognition, and means that too many people put off diagnosis until it is too late for medicines to help, or struggle alone thinking that they have Alzheimer's Disease when, in fact they have a curable illness that is causing memory loss.
Most people wait for two years or more before receiving help. Their fear means that they cope with their memory loss in silence. Sometimes, family and friends feel too awkward to discuss memory changes with their loved ones. Early diagnosis is key to the best chance of good treatment. It also gives people with incurable memory loss the opportunity to put their affairs in order and to make choices about their care.
Common Forms of Dementia
Alzheimer's diseasesymptoms include a progressive loss of recent memory; problems with language, calculation, abstract thinking, and judgment; depression or anxiety; personality and behavioral changes; and disorientation to time and place.
Lewy body dementia (LBD)is not a rare disease. It affects an estimated 1.3 million individuals and their families in the United States. Because LBD symptoms can closely resemble other more commonly known diseases like Alzheimer's and Parkinson's, it is currently widely under diagnosed. Many doctors or other medical professionals still are not familiar with LBD.
Some individuals will start out with a memory or cognitive disorder that may resemble Alzheimer's disease, but over time two or more distinctive features become apparent leading to the diagnosis of 'dementia with Lewy bodies' or LBD. Symptoms that differentiate it from Alzheimer's include unpredictable levels of cognitive ability, attention or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede the dementia and other symptoms of LBD by decades.
Others will start out with a movement disorder leading to the diagnosis of Parkinson's disease and later develop dementia and other symptoms common in LBD.
Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, leading to an initial diagnosis of LBD.
Regardless of the initial symptoms, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features, all caused by the presence of Lewy bodies throughout the brain.
Vascular dementiais caused by a series of small strokes that deprive the brain of vital oxygen. Symptoms, such as disorientation in familiar locations; walking with rapid, shuffling steps; incontinence; laughing or crying inappropriately; difficulty following instructions; and problems handling money may appear suddenly and worsen with additional strokes. High blood pressure, cigarette smoking, and high cholesterol are some of the risk factors for stroke that may be controlled to prevent vascular dementia.
Fronto-temporal dementia (FTD)includes several disorders with a variety of symptoms. The most common signs of FTD include changes in personality and behavior, such as inappropriate or compulsive behavior, euphoria, apathy, decline in personal hygiene, and a lack of awareness concerning these changes. Some forms of FTD involve language and speech symptoms or movement changes.
Early Detection is the Key
Memory loss that disrupts daily life is not a typical part of aging. It may be a symptom of Alzheimer's, a fatal brain disease that causes a slow decline in memory, thinking and reasoning skills. Every individual may experience one or more of these signs in different degrees. If you notice any of them, please ask for help.
Even when somebody has severe dementia, they still have the ability to enjoy pleasure, experience love, and express their feelings. For some, the freedom of memory loss allows for the emergence of new creativity and a more "in the moment" way of living. This is not to say that loss of memory and other aspects of brain functioning are not terrifying for the person experiencing the disease and their families. Rather, it is a plea to stop the silence and to bring discussion of dementia into our conversations. By breaking the silence, we do not leave people struggling with dementia alone in their journey. These elders lose the ability to express their feelings and desires and can be shut up from the consensus reality. Well-designed interventions — like the ones belonging to the expressive arts — can give elders, experiencing the challenges of dementia, a voice to express themselves. Read Helping Elders with Dementia by Dr. Doris Bersing, Living Well President and Founder.
Dementia Care at Home
Living Well C.E.O Dr. Tessa ten Tusscher says "We believe that through accurate diagnosis of people's cognitive strengths and vulnerabilities, we can develop support and programming that appropriately stimulates, offers joy, decreases agitation and helps people to remain safe in their own homes and within their communities. We also believe that dementia affects everybody who loves the person with the illness — so our programming offers support to the whole family. Our dementia specialists are highly trained in the specific interventions that can help the person with dementia to communicate their wishes, express their passion, and manage their fears as they progress through the various states of their disease. These include grief counseling, validation therapy, dance and movement, art, and simple connection..."
Read about using sand-play to help people with Dementia by Dr. Rochelle Suri.
View a video presentation about Poetic Movement: Poetics of Aging or how to use expressive arts and movement with people with dementia.
A last reminder
You need to remember that people have dementia...they experience that illness but they are not the illness. It is very important to focus on the uniqueness and individuality of each person and use the right interventions to help them express themselves and lead a fulfilling inner life. If your loved one experiencing any type of dementia seems lost, non-sense-like, or crazy, let's remember that this person just lost the ability to express his/her self but this person still owns that core that makes us unique individuals. Let Living Well help you and your loved one to understand and live through the process.