November’s Senior Power columns are about Dementia, Alzheimer’s (a form of dementia), their caregivers, and the dementia-hearing relationship.
November is National Alzheimer’s Month, also referred to as National Alzheimer’s Disease Awareness Month and National Caregiver Month. In recent years, scientists have ramped up efforts to find a cure for Alzheimer's disease, the sixth-leading cause of death in the United States. One in 8 aged 65+ persons suffer from AD; one in 2 senior citizens has AD by age 85.
Alzheimer's disease (AD) is the most common form of dementia. It is also called Alzheimer disease, senile dementia of the Alzheimer type, primary degenerative dementia of the Alzheimer's type, or simply Alzheimer's. This incurable, degenerative, and terminal disease was first described by German psychiatrist and neuropathologist Alois Alzheimer in 1906. It is most often diagnosed in people over age 65, although the less-prevalent, early-onset Alzheimer's can occur much earlier. In 2006, there were 26.6 million sufferers worldwide. AD is predicted to affect 1 in 85 people globally by 2050.
Dementia and Alzheimer’s differ. Dementia is a memory disorder due to loss of brain cells. Causes of dementia, other than Alzheimer’s, include a major stroke or multiple smaller strokes, multiple brain traumas, chronic alcoholism, or a history of encephalitis.
Alzheimer’s is a disease of the brain, not merely a manifestation of aging. Brain cells die prematurely and progressively, leaving the patient with impaired memory function, impaired decision-making ability, and reduced reasoning and learning capacity. Available treatments do not cure but can slow Alzheimer’s progression, making early diagnosis especially important.
Symptoms vary widely. The Mayo Clinic’s October 16, 2013 Housecall newsletter describes each of these warning signs:
- Memory loss that disrupts daily life. Typical is sometimes forgetting names or appointments, but remembering them later.
- Challenges in planning or solving problems. Typical is making occasional errors when balancing a checkbook.
- Difficulty completing familiar tasks at home, at work or at leisure. Typical is occasionally needing help to use the settings on a microwave or to record a television show.
- Confusion with time or place. Typical is getting confused about the day of the week but figuring it out later.
- Trouble understanding visual images and spatial relationships. Typical are vision changes related to cataracts
- New problems with words in speaking or writing. Typical is sometimes having trouble finding the right word.
- Misplacing things and losing the ability to retrace steps. Typical is misplacing such things as one’s glasses or the remote control.
- Decreased or poor judgment. Typical is once in a while making a bad decision.
- Withdrawal from work or social activities. Typical is sometimes feeling weary of work, family and social obligations.
- Changes in mood and personality. Typical is developing very specific ways of doing things and becoming irritable when a routine is disrupted.
The World Alzheimer Report 2013 is about dementia, which is on the increase. Nearly 700,000 people in the United Kingdom had dementia in 2005; by 2015, this number will have almost trebled. The disease, which is caused by the gradual death of brain cells, leads to the loss of memory, understanding, judgment, language and thinking. Research suggests that mid-life stress precedes dementia, while alcohol consumption can help stave it off.
Alzheimer’s disease has two victims: the patient and the family caregiver (assuming the patient has family.) The global AD epidemic is taxing caregivers. There are nearly 15 million AD and dementia caregivers in the United States. According to a Johns Hopkins study, family caregivers live longer than their peers, and there is increased life expectancy among family caregivers. A Report on the Alzheimer's epidemic straining caregiver and community resources appeared in HealthDay news, September 19, 2013. The situation is worldwide, and it calls for comprehensive changes.
In the 2011 play, Dementia Diaries / Dziennik Demencj), poet Maria Jastrzebska (a Polish refugee, then 58 years old), looked at how dementia affects those who have it as well as their family and carers. She hoped that her play would help explain the impact on sufferers, carers and families. Carer is British, caregiver is American -- someone who provides care. In the U.S., the caregiver is usually a family member or an employee. There are five characters: Tata and Mama, who both have dementia; their son, Edzio; an unnamed daughter; and Mrs. Alicja, their Polish carer. They speak to the audience, but never to one another. Told through their interweaving monologues, the drama explores the troubled relationships within a family struggling to cope.
In a Q&A session, Dementia Diaries’ director asked how many audience members had a connection with dementia (80%). A social worker volunteered that the son in the play -- with “his constant letters of complaint, phone calls and harangues” -- is a character they know only too well. Clearly, Dementia Diaries’ audiences felt more for those around the demented than for victims of the disease itself.
There’s some good news, and often it can often be read online or as “hard copy.” A few examples:
“The good news on Alzheimer’s: Better ways to diagnose it. Drug trials offer promise” (Kendall Powers. Washington Post. September 30, 2013)
“Trials at Washington U. medical school offer hope for Alzheimer’s treatment” (Michelle Munz. St. Louis Post-Dispatch. October 3, 2013).
“Blood pressure drugs have been shown to decrease the risk of Alzheimer's disease dementia.” (Eurekalert American Association for the Advancement of Science, October 16, 2013). EurekAlert! is an online, global science news service, sponsored by the American Association for the Advancement of Science (AAAS;) it features health, science and technology news from leading research institutions.
"A new DNA vaccine induces a Th2 immune response in Alzheimer's disease mice," (Eurekalert AAAS, October 28, 2013).
"Lasers might be the cure for brain diseases such as Alzheimer's and Parkinson's," (Eurekalert American Association for the Advancement of Science, November 3, 2013).
"'Path to 2025' Alzheimer's Disease Summit: Reforms urgently needed tostreamline road to Alzheimer's," (Eurekalert[American Association for the Advancement of Science, November 6, 2013).
"New Batch of Alzheimer's Genes Discovered," (HealthDay, October 28, 2013).
"Alzheimer's Patients Retain Lifelong Values," by Katharine Gammon (Medscape Medical News, October 28, 2013).
"Fasting at Least Twice a Week Seen as Alzheimer’s Hedge," by Makiko Kitamura (Bloomberg, October 28, 2013).
The major genetic risk factor for Alzheimer's disease (AD) is present in about two-thirds of people who develop the disease. It is ApoE4, the cholesterol-carrying protein that about a quarter of us are born with. But one of the unsolved mysteries of AD is how ApoE4 causes the risk for this incurable, neurodegenerative disease. Buck Institute researchers have found a link between ApoE4 and SirT1, an "anti-aging protein" that is targeted by resveratrol, present in red wine.
California’s Senior Legislature Assembly health committee voted last week during its annual meeting in Sacramento to push a bill to adopt a state strategic plan on aging. According to CSL senator Jim Levy, the state developed an aging plan in 2009, complete with 28 specific action-item recommendations, but the Legislature never codified it.
"Those 28 proposals were supposed to go to the Legislature in 2010, and it moved through committees and a floor vote before getting stuck in the Assembly Committee on Appropriations. They said ‘no, it's going to cost $4,000 to do this’. This time the provision for state money will be withdrawn, and the $4,000 to implement the proposals will come from federal funds or private donations. This bill is to request that the government put together a strategic plan on aging. The 2009 report did the hard part, convening the experts, narrowing down the concerns, writing up recommendations. The next step is to put those ideas into action. The first recommendation is very good. It says the state has to change their philosophy on aging issues.” [“Seniors Seek Strategic Plan on Aging”by David Gorn, California Healthline, November 6, 2013]
California is one of the states taking advantage of a new financing option made available under the Affordable Care Act to support community-based, long-term care services. Oregon is another. The Community First Choice Option (CFCO) allows participating states to secure an increase of 6 percentage points in the federal share of the federal-state Medicaid funding partnership for home-and community-based attendant services to beneficiaries who otherwise would need institutional care. Six other states have either submitted plans to participate or intend to submit plans by the end of fiscal year 2014. Advocates hope that the data collected through CFCO will demonstrate that in the long run, home-and community-based services are less costly than institutional care.
A lawsuit filed on October 22, 2013 in Alameda Superior Court against the California Department of Public Health (DPH) on behalf of California Advocates for Nursing Home Reform (CANHR) and several nursing home residents seeks to find unconstitutional a California law that permits nursing home residents to be found incompetent and administered mind-altering drugs, placed in physical restraints, have life sustaining treatment ended and denied due process if they seem not to have a “surrogate” or anyone to assist them in opposing such treatment decisions. ["Castro Valley: Janitor saw elderly become weak," by Carolyn Jones (San Francisco Chronicle, Nov. 1, 2013).]
CANHR is releasing its report, Residential Care in California: Unsafe, Unregulated & Unaccountable, on the crisis in care at California's 7,500 Residential Care Facilities for the Elderly (RCFEs). The recent abandonment of 14 [or more] bedridden residents at Valley Springs Manor in Castro Valley highlights the serious problems in oversight and enforcement. CANHRRHR calls upon Community Care Licensing, the agency responsible for regulatory oversight and enforcement of RCFE laws, to reclaim its role as a consumer protection agency. California legislators and the Department of Social Services are also called upon to address this crisis in care and to create a new model of care where the health and safety of residents take priority. Contact: Patricia L. McGinnis, Executive Director, California Advocates for Nursing Home Reform (CANHR ). http://www.canhr.org.