“There’s really been an explosion related to the biology,” said Dr. Bruce L. Miller, a professor of neurology and psychiatry there. “I think at least some subtypes of frontotemporal dementia will be the first neurodegenerative diseases we find a cure for.”

This disease is different from Alzheimer’s, the most common form of dementia. But it is perhaps even more devastating, because it strikes younger people, progresses faster and, unlike Alzheimer’s, does not attack memory at first but begins with silence, apathy or bizarre personality changes. It is thought to afflict at least 50,000 to 60,000 people in the United States.

Read the article on the New York Times website.

11 APRIL 2012 | GENEVA – Worldwide, nearly 35.6 million people live with dementia. This number is expected to double by 2030 (65.7 million) and more than triple by 2050 (115.4 million). Dementia affects people in all countries, with more than half (58%) living in low- and middle-income countries. By 2050, this is likely to rise to more than 70%.

Treating and caring for people with dementia currently costs the world more than US$ 604 billion per year. This includes the cost of providing health and social care as well the reduction or loss of income of people with dementia and their caregivers.

New WHO report: Dementia: a public health priority

Only eight countries worldwide currently have national programmes in place to address dementia. A new report Dementia: a public health priority, published by the World Health Organization (WHO) and Alzheimer’s Disease International, recommends that programmes focus on improving early diagnosis; raising public awareness about the disease and reducing stigma; and providing better care and more support to caregivers.

Improving early diagnosis

Lack of diagnosis is a major problem. Even in high-income countries, only one fifth to one half of cases of dementia are routinely recognized. When a diagnosis is made, it often comes at a relatively late stage of the disease.

“We need to increase our capacity to detect dementia early and to provide the necessary health and social care. Much can be done to decrease the burden of dementia,” says Dr Oleg Chestnov, Assistant Director-General, Noncommunicable Diseases and Mental Health at WHO. “Health-care workers are often not adequately trained to recognize dementia.”

Raising public awareness and reducing stigma

The report points to a general lack of information and understanding about dementia. This fuels stigma, which in turn contributes to the social isolation of both the person with dementia and their caregivers, and can lead to delays in seeking diagnosis, health assistance and social support.

“Public awareness about dementia, its symptoms, the importance of getting a diagnosis, and the help available for those with the condition is very limited. It is now vital to tackle the poor levels of public awareness and understanding, and to drastically reduce the stigma associated with dementia,” says Marc Wortmann, Executive Director, Alzheimer’s Disease International.

Providing more support to caregivers

Strengthening care is also key. In every region of the world, most caregiving is provided by informal caregivers – spouses, adult children, other family members and friends. The report notes that people who care for a person with dementia are themselves particularly prone to mental disorders, such as depression and anxiety, and are often in poor physical health themselves. Many caregivers also suffer economically as they may be forced to stop working, cut back on work, or take a less demanding job to care for a family member with dementia.

The report recommends involving existing caregivers in designing programmes to provide better support for people with dementia and those looking after them. Community-based services can provide valuable support to families caring for people with dementia in both high- and low-income countries – delaying the need for people to enter into high-cost residential care. At the same time, health workforce training needs to pay closer attention to dementia, and the skills required to provide both clinical and long-term care.

Dementia is a syndrome, usually of a chronic nature, caused by a variety of brain illnesses that affect memory, thinking, behaviour and ability to perform everyday activities. Alzheimer’s disease is the most common cause of dementia and possibly contributes to up to 70% of cases.

About dementia and Alzheimer’s disease
Dementia is a syndrome that can be caused by a number of progressive disorders that affect memory, thinking, behaviour and the ability to perform everyday activities. Alzheimer’s disease is the most common cause of dementia.

The World Health Organization is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends.

Alzheimer’s Disease International (ADI) is the international federation of 78 Alzheimer associations that support people with dementia and their families in their respective countries. Founded in 1984, ADI serves as a network for Alzheimer associations around the world to share and exchange information, resources and skills. Its vision is a better quality of life for people with dementia and their families. ADI is based in London and is registered as a non-profit organization in the state of Illinois, USA.

Source: http://www.who.int/mediacentre/news/releases/2012/dementia_20120411/en/

Charlie Rose Brain Series 2: Generalized Defects in Cognition: Alzheimer’s Disease with Eric Kandel of Columbia University, Marc Tessier-Lavigne of Rockefeller University, Alison Goate of Washington University’s School of Medicine in St. Louis, David Holtzman of Washington University in St. Louis and Bruce Miller of University of California, San Francisco

Dr. Bruce Miller, Director, Memory and Aging Center, UC San Francisco discusses FTD with the Brain Series panel.

Neurology Today
05 May 2011; Volume 11(9); pp 31-32,  Friedman, Roberta Phd

©2011 American Academy of Neurology

• Denis Campbell, health correspondent
• The Guardian, Thursday 15 December 2011

Hospitals are failing to care properly for the growing number of people with dementia, according to an NHS-funded report, which has prompted demands for big improvements to help patients.

Most staff do not have the skills to cope with such challenging patients, who too often receive “impersonal” care and suffer from boredom, the first National Audit of Dementia found. It says hospitals should introduce “dementia champions.”

Many hospitals have not taken simple steps to lessen the distress and confusion which dementia sufferers’ often feel on being somewhere so unfamiliar – such as making signs large and easy to read, using colour schemes to help patients find their way around unfamiliar wards and not putting family mementoes such as photographs nearby.

The findings emerged from questionnaires filled in by 2,211 staff in 145 wards of 55 hospitals in England and Wales and 105 observations of care of dementia patients. Two-thirds of staff said they had not had enough training to provide proper care, 50% said they had not been trained how to communicate properly with such patients and 54% had not been told how to handle challenging or aggressive behaviour.

One said: “I have never had any training related to caring with patients with dementia or Alzheimer’s. As staff have not yet had training, I feel that these patients do not receive the specialised attention that they deserve, or understanding and time from staff.”

The report, commissioned by the Healthcare Quality Improvement Partnership (HQIP) and undertaken by the Royal College of Psychiatrists’ Centre for Quality Improvement and other organisations, found that: “On most hospital wards there is little evidence of a person-centred approach or ‘culture’, or that the care received by patients is generally person-centred.”

“This shocking report proves once again that we urgently need a radical shake-up of hospital care,” said Jeremy Hughes, chief executive of theAlzheimer’s Society. “Given that people with dementia occupy a quarter of hospital beds and that many leave in worse health than when they were admitted, it is unacceptable that training in dementia care is not the norm.”

Professor Peter Crome, chair of the audit’s steering group, said the report “provides further concrete evidence that the care of patients with dementia in hospital is in need of a radical shake-up”. While a few hospitals had risen to the challenge of improving patients’ experiences, many have not, he said. The report recommends that all staff receive basic dementia awareness training, and staffing levels should be maintained to help such patients.

Paul Burstow, the care services minister, said the audit should be “a must-read” for hospital directors.

While it had found some hospitals taking steps to improve, “far too many hospitals [are] failing to put in place dementia-friendly care. It is time for the NHS to put in place the training and support that improves the care and treatment of people with dementia, and saves money too.”

Dr Peter Carter, chief executive and general secretary of the Royal College of Nursing, said it was “extremely worrying” that two-thirds of staff felt under-trained to provide skilled, knowledgeable care to people with dementia.

There is “an urgent need to improve the experience of people with dementia who are cared for in general hospitals”, for example by employing enough staff and ensuring they have both the right skills and time to care, Carter added.

Labour accused the government of not giving dementia care high enough priority. Liz Kendall, the shadow minister for care and older people, said none of health secretary Andrew Lansley’s 60 new “key indicators” of NHS performance required improvements in this area.

And coalition cuts to council services for older people meant dementia sufferers were not getting the care and support they need to continue living independently in their own homes, Kendall added.

A National Audit Office report criticises NHS care of the two million patients with neurological conditions such as Parkinson’s disease and Multiple Sclerosis.

http://www.macfound.org/site/c.lkLXJ8MQKrH/b.7731005/k.8DB3/William_Seeley.htm

Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and National Alliances of Patient Organisations at the national level
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world event, with the US joining in 2009 and patient organisations in 56 other countries participating in 2011. We hope many more will join in 2012. Our objective is for the WHO to recognise the last day of February as the official Rare Disease Day.

http://www.rarediseaseday.org/

Add to your Calendar by clicking HERE.

Researchers have recently found a single gene cause for two neurodegenerative conditions that are distinct but related, frontotemporal dementia (FTD) andamyotrophic lateral sclerosis (ALS).

In an online issue of the scientific journalNeuron, researchers at Mayo Clinic in Florida, in collaboration with the UCSF Memory and Aging Center and others, report that the newly discovered genetic abnormality is responsible for a significant proportion of families with both FTD and ALS (FTD/ALS) and many families where the dominant syndrome is either familial FTD or familial ALS. Less commonly, it is associated with sporadic FTD or sporadic ALS, meaning occurrences of FTD or ALS without a family history.

The mission of the Frontotemporal Lobar Degeneration Association is to promote research, education and awareness of FTLD and related neurodegenerative diseases.

OUR SCIENTIFIC BOARD OF DIRECTORS

PAUL E. SCHULZ, M.D.

Dr. Schulz is Associate Professor of Neurology, UTHealth, Houston, TX; Vice Chair of The Methodist Hospital Neurology Service; Elected Director, Dementia Clinics, UTHealth; Director, Neuropsychiatry and Behavioral Neurology Fellowship.

B.A.s in Medical Sciences and Psychology: Boston University School of Medicine, Boston, MA; M.D. Degree: Boston University School of Medicine, Boston, MA; American Board of Psychiatry and Neurology Certification, 1990.  2009, 2010: “One of Houston’s Top Doctors” H-Texas magazine, March, 2009. 2009: “Doctor’s Choice”, Health and Fitness Magazine, Elected. 2008, 2009: “Super Doc” named in December issue of the Texas Monthly.

Other Activities: The Methodist Hospital Emergency Department Care Management Performance Improvement Subcommittee, The Methodist Hospital Neurology Care Management Performance Improvement Committee, The Methodist Hospital Psychiatry Care Management Performance Improvement Subcommittee, The Methodist Hospital Practitioner Health Committee.

BRUCE MILLER, M.D.

Dr. Miller is Professor of Neurology at the University of California at San Francisco (UCSF) where he holds the A.W. & Mary Margaret Clausen Distinguished Chair. Dr. Miller is the clinical director of the Memory and Aging Center (MAC) at UCSF, which is funded through the State of California, the National Institutes of Health (NIH), and the Larry L. Hillblom Foundation, amongst others. Dr. Miller has received many awards including the Potamkin Award from the American Academy of Neurology, the Raymond Adams Lecture at the American Neurological Association, and the Elliot Royer Award from the San Francisco Neurological community.

RAYMOND A. FABER, M.D.

Dr. Faber is Clinical Professor of Psychiatry, University of Texas Health Science Center at San Antonio; Director, Electroconvulsive Therapy Program, Laurel Ridge Treatment Center, San Antonio; and Chief, Neuropsychiatry Program, South Texas VA Medical Center.

 Sarah Oxford

 Executive Director
Oxford@ftlda.org

  Terri Bratton-Shultz

  President, Founder

  Shultz@ftlda.org

Office:

8151 Broadway, Suite 102

San Antonio, Texas 78209 USA

(210)824.9510