Columns

Ron Reagan suggests in his new book, My Father at 100; A Memoir (Viking/Penguin,) that his father suffered from the beginning stages of Alzheimer's disease while he was still in the White House. President Ronald Reagan was diagnosed with Alzheimer's in 1994, five years after leaving office. He died in 2004 at age 93. Reagan's son (born 1958) writes that he believes his father would have left office before his second term ended in 1989 had the disease been diagnosed then. "I've seen no evidence that my father (or anyone else) was aware of his medical condition while he was in office," Reagan writes. "Had the diagnosis been made in, say 1987, would he have stepped down? I believe he would have." 

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 65 years of age, 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. 

Late news: Research suggests alcohol consumption helps stave off dementia, and an Alzheimer's vaccine in a nasal spray (American Association for the Advancement of Science, March 2 and February 28, 2011); Alzheimer's risk looks higher if mom had the disease, (Jenifer Goodwin, HealthDay, February 28, 2011. 

xxxx 

Dementia is on the increase. According to Alzheimer's Research UK, in 2005, nearly 700,000 people in the United Kingdom had dementia. 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. 

Dementia Diaries, a new play by poet Maria Jastrzebska (born 1953), looks at how the illness affects those who have it, as well as (and mainly) their family and carers. A review by John O'Donoghue of this drama appeared in the Feb. 22, 2011 Guardian [London]. Carer is British, caregiver is American -- someone who provides care. In the U.S., the caregiver is usually a family member who presumably cares, or an employee.  

Dementia Diaries has just finished its first run in Southampton and is headed to London as part of its tour around the country, playing to audiences of medical professionals, carers and the general public, on tour throughout 2011. What is it really like to experience dementia – or to care for and or provide care for someone with this disease? Jastrzebska hopes that her play will help to explain the impact on sufferers, carers and families. "I wanted to find a metaphor for the way this illness affects not only the sufferers but also those around them. So I came up with the idea of inter-woven monologues," says Jastrzebska. 

There are five characters: Tata and Mama, who both have dementia; their son, Edzio; an unnamed daughter; and Mrs Alicja, their Polish carer. (Jastrzebska was a refugee from Poland.) Each has monologues. They speak to the audience, but never to one another. “This represents the way family members can sometimes speak without listening when a situation like this happens." Jastrzebska also wants this device to show what it is like for carers too. "Families come under immense strain when a loved one has dementia," she says. "And agreeing what to do, getting help, can sometimes be very difficult." 

Mama and Tata demonstrate this in a particularly affecting moment. Tata, played by Tim Barlow (born 1936), suddenly stalls. He can't find the word he is looking for. Until this point, he has been very fluent, if at times a little forgetful, but suddenly his helplessness becomes glaringly apparent. Mama, played by Anna Korwin: “My daughter came today. She's a nice girl, a good girl, it's such a pity she's a prostitute,” which, the Guardian reports, “brings the house down.” I don’t think that’s so funny. In a Q and A session following the performance, the subject of laughter provoked heated discussion. Is dementia a subject we should be laughing at, asked an audience member. Of course there should be laughter, responded a health worker. Jastrzebska explained that she wants the audience to laugh with the characters, not at them. An old-cop out. 

In the Q&A session, the director asked how many audience members had a connection with dementia. Eighty per cent raised their hands. A good question. A social worker volunteered to reporter O'Donoghue that Edzio, the son -- with “his constant letters of complaint, phone calls and harangues” -- is a character they know only too well. Clearly, Dementia Diaries’ audience feels more for those around the demented than for victims of the disease.  

The play has been put on with the help of Wellcome Trust, a charity dedicated to improvements in health. The cast have also worked with the Memory Assessment and Research Centre (MARC), based at Moorgreen Hospital in Southampton and a leading center in Europe for dementia research, which has helped to make the depiction more realistic, e.g. how characters should speak and move. 

xxxx 

Alzheimer’s and dementia are in the news worldwide: 

“Speaking a second language can delay dementia onset for years," by Steve Connor (Independent [London], Feb. 19, 2011). 

"Alzheimer Cafe in Nova Scotia town first of its kind in Canada," by Oliver Moore (Globe and Mail [Toronto, Ontario], Feb. 22, 2011). 

"More legal guardians needed [in Japan]/ Training sought for handling of affairs of elderly with dementia" (Yomiuri Shimbun [Tokyo], Feb. 22, 2011). 

xxxx 

Use of subject headings and keywords in libraries’ catalogs provides leads to numerous media, e.g. "The Alzheimer’s Project," a presentation of HBO Documentary Films and the National Institute on Aging at the National Institutes of Health (hbo.com/alzheimers). The Berkeley, California Public Library’s BIN identifies supportive organizations, agencies and resources. In Alameda County, California, contact:  

Alzheimer’s Association Helpline 1 80 272-3900 

Alzheimer’s Services of the East Bay, Berkeley 510 644-8292 

Ethnic Elders Care www.ethnicelderscare.net 

Family Caregiver Alliance, San Francisco 1 800445 8106 

UC, Davis Alzheimer’s Disease Center, Martinez 1 925-372-2485. 

REMINDER: 

Saturday, March 19 at 2 PM and Tuesday, March 22 at 6 P.M., both at Central library, 

2090 Kittredge St., Berkeley, CA 94704: freepublic training on usingAncestry.com data base. Confirm date and time (510) 981-6100. 

Generations United is “Improving the lives of children, youth and older adults through intergenerational collaboration, public policies, and programs.” Generations United seeks nominations for individuals and organizations that make significant contributions towards rethinking and revitalizing intergenerational connections. Awards will be presented during the 16th International Conference Award Banquet on July 28, 2011. Applications should be received by March 31, 2011. Contacts: www.gu.org. 1331 H Street NW, Suite 900 Washington, D.C. 20005. 202-289-3979. 

IN THE NEWS: 

The IRS in partnership with AARP sponsors the Tax Aide program, which assists elderly tax filers in communities around the country. In addition, the military coordinates VITA services. Many VITA or Tax Aide sites offer e-filing, which allows families to receive their refunds even faster. Most free tax preparation sites are open and running. To locate a VITA or Tax-Aide site in your area, call (800) 906-9887. Many sites are appointment-only or have specified drop-in hours, so check with each one for their schedules. Beware of scams! Do not to give out Social Security Numbers or bank information over the phone, or to individuals who come to your home claiming to be IRS representatives, or in response to e-mails.  

The 704-member ELDER JUSTICE COALITION, a national advocacy voice for elder justice in the U.S. (elderjustice@verizon.net) in a March 2, 2011 press release, comments on a GAO report on Adult Protective Services released at a hearing held by the Senate Special Committee on Aging. “The report paints an alarming picture of APS which operate in all 50 states… They are the front line in the fight against elder abuse and the lead force in elder abuse prevention yet they are increasingly losing ground in the fight through the failure of state and federal funding to keep pace with increased demand for their services.” The Coalition noted that President Obama’s FY 2012 budget includes just under $22 million for the Elder Justice Act, mostly to assist the long-term care ombudsman program. In California in fiscal year 2009: 76,340 reports of alleged elder abuse were received; 58,338 were investigated; 21,300 cases substantiated. The complete report is available online. 

More than 90 percent of nursing homes employ one or more people who have been convicted of at least one crime, federal investigators reported [March 2, 2011.] Five percent of all nursing home employees have at least one criminal conviction. The report was issued by the inspector general of the Department of Health and Human Services, who obtained the names of more than 35,000 nursing home employees and then checked with the Federal Bureau of Investigation to see if they had criminal records.  

The New York City Department for the Aging has released its list of senior centers that would close if the state cuts 25 million dollars from its Title XX. The list of centers is long, and will impact eight to 10,000 senior citizens city wide. Senior citizens are the fastest growing population in New York City, and they could lose these centers by April.  

Helen Rippier Wheeler can be reached at pen136@dslextreme.com. No email attachments; use “Senior Power” for subject. 

###