Lewy Body Dementia or “LBD”

Written By:  Gayle Horton

Lewy Body dementia affects 1.3 million people in the USA and it is no longer considered a rare disease. My experience has been that this disease is frequently diagnosed as Parkinson’s or Alzheimer’s. The progression of symptoms is about one to two years prior to making a formal diagnosis.

Frederich H. Lewy a scientist discovered abnormal protein deposits that disrupted the brain’s normal functioning in the early 1900’s. These Lewy body proteins deplete the neurotransmitters called dopamine which affect the brain stem, and then cause Parkinson’s like symptoms. These abnormal proteins are diffused throughout other areas of the brain, including the cerebral cortex causing a disruption of perception, thinking and behavior.

Lewy Body dementia symptoms differ from person to person. The symptoms may fluctuate as often as moment to moment or day by day. The difficultly for a doctor using a standard mental assessment to diagnose cognitive changes, with the LBD patient they may score in the normal range on certain tests. The family becomes very confused about the doctor’s inability to diagnose the patient when they see symptoms change dramatically hour by hour.

Most LBD patients complain of visuospatial difficulties including depth perception, difficulty with their directional sense or illusions. They may have problems with fluctuating blood pressure, variable heart rate, sexual disturbance, excessive sweating, fainting, dry eyes and mouth.

Progressive dementia with deficits in attention and executive function are typical symptoms of LBD. Significant memory impairment may not be evident in the early stages. Recurrent complex and detailed visual hallucinations, along with fluctuating cognition and changes in the attention span and alertness are all symptoms of Lewy Body dementia.

Frequently doctors diagnose a person with Parkinson’s, and within one year of watching the decline in cognition, the doctor changes the diagnosis to Alzheimer’s disease, when in fact the person has Lewy Body dementia.

Medications called cholinesterase inhibitors are considered standard treatment for the cognitive symptoms in LBD. Another factor to be considered when starting medications for patient’s with LBD is the severe sensitivity to anti-psychotic drugs and other medications. These medications can worsen the Parkinsonism and decrease the cognition and increase hallucinations.

For more detailed information please go to the Lewy Body Dementia Association web site. LBD support groups around the country can provide additional resources and support for families. As a Geriatric Nurse, I coach families to push the medical professionals to consider Lewy Body dementia when a patient is not improving with standard forms of treatment for Parkinson’s or Alzheimer’s.

Frontotemporal Lobe Dementia

Written By:  Gayle Horton

As many as seven million Americans may have a form of dementia called Frontotemporal dementia or FTD. This form of dementia may account for 140,000 to 350,000 cases of dementia in the USA. FTD is difficult to diagnose and it clearly takes a toll on any family trying to help someone they love.

Frontotemporal dementia describes a syndrome involving shrinking of the frontal and temporal anterior lobes of the brain. The areas of the brain affected by FTD control reasoning, personality, movement, speech, social graces, language and some aspects of memory.

The earlier name for this condition was called Pick’s Disease. Progressive aphasia or language impairment and semantic dementia or a progressive loss of the ability to remember the meaning of words describes FTD.

The early symptoms of FTD are inappropriate social behavior, lack of social graces, lack of empathy, increased interest in sex, changes in food preferences, agitation or blunt emotions, and loss of insight into their own behavior. Neglect of personal hygiene, repetitive or compulsive behavior, and decreased energy and motivation can be all associated with FTD.

FTD occurs predominantly after age 40 and usually before age 65, with out regard to gender. In nearly half of the patients, a family history of dementia exists in a parent or sibling, suggesting a genetic component.

To diagnose FTD a medical professionals use a CT scan or MRI of the brain, to reveal cerebral atrophy in the frontotemporal regions. An EEG will remain normal even in advanced stages. Duration and treatment of FTD varies with some patients declining rapidly over two to three years and others showing only minimal changes over a three to seventeen year period.

There is no cure for frontotemporal dementia and no effective way to slow its progression. Treatment choices rely entirely on managing the symptoms.

No medications are known currently to treat or prevent FTD. Some antidepressants may help boost the serotonin to alleviate some behaviors. People experiencing language difficulties may benefit from speech therapy, to learn alternate strategies for communication.

People who have frontotemporal dementia often don't recognize that they have a problem. In many cases, family members are the ones who notice the symptoms and arrange for a doctor's appointment. Your family physician may refer you to a neurologist or geriatric psychiatrist for further evaluation and help to manage the difficult behaviors.

Understanding Aging

Written By:  Gayle Horton

The older we become the more independent we strive to be, and we certainly do not want to be treated as if we are “OLD!” The definition of old is ten years older than we are!

While adolescence is about the loss of childhood, old age is about the loss of adult status and power. Many older adults are dealing with the loss of friends, economic inflation trying to live on a fixed income, and their own impending death.

All personalities have deformities, but they are intensified as we grow older. The mask of socialization becomes less and less important, which leads to becoming more self focused, quarrelsome, forgetful, and suspicious.

Older adults also fear increasing cost of health care, feeling useless, and feeling lonely. They fear that they are more vulnerable with the increase in the crime rate, and decreasing physical and mental abilities. They also fear that they are loosing their independence when they can no longer drive, and they are being forced out of their homes.

Our health care system does not let people die today; we have a medicine, treatment, or surgery to keep them alive. To ensure quality of life, we all need to make certain that we have reviewed and updated our durable power of attorney for healthcare. When a family is faced with difficult decisions this document will provide great value to help the doctor’s follow your wishes.

Today we have more resources and options for older adults than ever before. We have retirement communities, assisted living, nursing homes, home care, and hospice.

With all of theses resources it is often overwhelming. It is important to consider working with an independent geriatric nurse or geriatric care manager to evaluate the situation objectively. This person will make good recommendations for your situation and provide the peace of mind that you are doing all that you can do during a difficult time.

The adult children often become involved during a crisis which usually forces them to make changes in their parents living arrangements. It is very difficult to manage the care for someone that you love from a distance. The older and more frail the person becomes, the more supervision they will need to keep them safe.

Alzheimer’s has changed the statistics in aging dramatically with 1 in 2 people being diagnosed with Alzheimer’s at age 85, and 1 in 10 people age 65 and older. Heart disease still remains the number one cause of death today.

It is hard to tell how well the older adult is doing when you can only talk on the telephone, because they are masters at covering up the truth, and trying not to bother their adult children.

Most older adults want to stay in their own home until they die – but reality shows us that congregate living has a great deal to offer any older person. Socialization is the key to longevity and isolation and loneliness have been attributed to the high rate of suicide among older adults.

This generation only had one option available and they all fear the “Old Peoples Home” or “Nursing Home.” The real fact is that only one in every two people will live in assisted living and only one in twenty people will ever live in a nursing home before they die. Today 61% of our nursing home residents in the U.S. are people that can not afford to live in Assisted Living or at home.

The cost of home care on average is about $225 to $400 per 24 hour period. When you add the monthly and yearly costs for home care it is usually not a realistic long term option. Assisted Living is about one third of the cost of home care.

Medicare does not pay for the cost of care in the home, assisted living, or long term nursing home care. Older adults that are indigent would be eligible for the state’s Medicaid to pay for nursing home care. Long Term Care Insurance can make all of the difference when you are forced to pay for your own care if you have planned well for your retirement.

I find that men and women emerge a new self when they are psychologically well adjusted with their aging. Our Centenarians have the same thing in common, and we should listen to their wisdom.

  • They eat a healthy diet.
  • They get some form of exercise every day.
  • They have a strong faith.
  • They have something that gives them a sense of purpose in their life.
  • They also try to look at the lighter side of life, and they even laugh even at themselves.

It is important to remind an older adult that they may be facing a new chapter in their life, but it does not have to be the last chapter. We are a seed on this earth just like a tree…we need to keep growing or we die.

What is Geriatric Care Management?

Written By:  Gayle Horton

Geriatric care management can be a valuable option for older people and their families. Increasing numbers of older people are living to advanced ages each year. Care management generally is defined as a service that assesses an individual’s medical and social needs and coordinates assistance from paid service providers and family members.

Continuity of care management will improve communication between family members, doctors and other professional service providers. Finding the right long term care providers and services can be difficult. A care manager can be a quality control specialist. and cost containment specialist by helping to avoid unnecessary ER visits.

A professional geriatric care manager can give you the peace of mind that you are doing all that you can do for the older person that you love. In this newsletter you will meet the SFS Care Managers. Call our office to discuss care management for your loved one.

The latest news about Alzheimer’s

Written By:  Gayle Horton

The University of Iowa has done research on the use of appropriate choices of entertainment for older adults with dementia.

The brain converts new information into memory in the hippocampus--an area of the brain that's usually damaged in dementia patients. Long-term memories are still accessible, but new memories can't be processed. So a patient can remember an old friend, but can't remember that the friend paid a visit just an hour ago.

Even so, the visit makes a big difference.

The University of Iowa researchers explored this phenomenon with a two-part experiment.

In part one, a group of patients (all with hippocampus damage) were shown sad film clips, such as the scene in Forrest Gump where Forrest is alone at his wife's grave. These clips produced strong reactions, bringing some of the patients to tears.

Within 30 minutes of the last clip, all the patients had forgotten they'd watched the clips.

But in the Proceedings of The National Academy of Sciences, the authors of the study write, "The patients continued to experience elevated levels of sadness well beyond the point in time at which they had lost factual memory for the film clips."

Part two of the study followed the same design, but with funny or inspiring film clips. And the result was the same. Within minutes, the film clips were forgotten, but good feelings remained long after.

In an NPR report about the study, Justin Feinstein, leader of the UI team, offered this advice for caretakers: "Telling them a simple joke, calling them up on the phone, giving them a visit, could actually have these enormous positive benefits."

We have over 5.3 million people diagnosed with Alzheimer’s disease in the United States and there is very little entertainment available for their enjoyment. The Journey Remembered DVDs were designed to entertain people with memory loss by creating access to deep rooted memories of the past with uplifting visual images and beautifully created music designed to relax and entertain the viewer.

For more information please visit:

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