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Alzheimer’s Disease: is our Healthcare System Ready?

In the midst of much healthcare reform talk, not Alzheimer's Disease reportenough attention seems focused on ensuring healthcare systems’ preparedness to deal with cognitive health issues -with Alzheimer’s Disease as the most dramatic example- which are predicted to grow given aging population trends.

Today is World Alzheimer’s Day, and the USA Today comments on a new report that makes stark predictions:
Global Alzheimer’s cases expected to rise sharply (USA Today)

– “The 2009 World Alzheimer’s Report, released today, estimates 35 million people worldwide are living with Alzheimer’s and other forms of dementia. The figure is a 10% increase over 2005 numbers.”

– “The number of people affected by Alzheimer’s is growing at a rapid rate, and the increasing personal costs will have significant impact on the world’s economies and health care systems,” said Harry Johns, President and CEO of the Alzheimer’s Association. “We must make the fight against Alzheimer’s a priority here in the United States and worldwide,” he said.

– “The report by London-based nonprofit Alzheimer’s Disease International (ADI), an international federation of 71 national Alzheimer organizations (including the Alzheimer’s Association), indicates that the number of people with dementia is expected to grow sharply to 65.7 million in 2030 and 115.4 million in 2050.”

Link to report: Here

The Alzheimer’s Association is organizing multiple Memory Walks to raise awareness and funds. You can learn more and join Here. (Perhaps a good opportunity to organize a “walking book group” as Arthur Kramer suggested in the SharpBrains Guide?)

The City of San Francisco, led by its Department of Aging and Adult Services (DAAS), convened since san francisco2008 an Alzheimer’s/ Dementia Expert Panel to identify gaps and issue recommendations to address the growing crisis in dementia care at the city level, and is about to release a pioneering plan that may well influence public health initiatives in other cities and states. An interim document can be found here: 2020 Foresight-Strategy For Excellence in Dementia Care (pdf)

One of the major areas of focus for that strategy was Education & Prevention, and below we can share a summary of the preliminary findings and recommendations. We will highlight the final report when ready.

ALZHEIMER’S/DEMENTIA EXPERT PANEL

EDUCATION AND PREVENTION SUBCOMMITTEE

FINDINGS AND RECOMMENDATIONS

The subcommittee’s charge was to consider how best to educate the San Francisco community about Alzheimer’s and related dementias to change attitudes, beliefs, behaviors, standards of practice, and outcomes associated with the disease.

Specific topics addressed include:
· Protective factors relating to dementia, including risk factors and brain health
· Early identification of dementia
· Early access to services
· Community education
· Education of professionals and nonprofessionals, including physicians, psychiatrists and psychologists, social workers, nurses, and other caregivers, both paid caregivers and informal caregivers such as family and friends
· Ethical issues
· Policy issues

The dissemination of accurate information about Alzheimer’s and related dementias can play an important role in delaying the onset of dementia, slowing disease progression, and improving the quality of life for people with dementia and their caregivers and the other people in their lives.

A great deal of information about dementia is available, but it is often fragmented, hard to find, or not delivered to people when they need it. For example, the subcommittee identified many good examples of educational materials appropriate for people who provide informal caregiving services to people with dementia, but at the same time found that caregivers often receive no support or information about early symptoms and little to no information or referrals at the time their loved ones are diagnosed. The opposite problem is information overload, and the need to ensure that people receive information when they need it and are able to handle it.

In addition to ensuring that information about dementia is organized and available, effective education and prevention efforts will also require countering stigma associated with older adults and with dementia.

It is also important that education and prevention efforts be culturally competent, so as to address effectively the needs of San Francisco’s diverse population. San Francisco is very ethnically diverse with a large Asian Pacific Islander population, a large Hispanic population, and a smaller African American population, with different cultural attitudes toward dementia and the person who has it. Many people from different racial and ethnic communities, especially those who are mono-lingual, require assistance with decision-making, and the paperwork required to establish a Durable Power of Attorney for Health Care.

Education and prevention initiatives must also account for differences in health literacy. This means that some information must be designed for people with low literacy, some must be in languages other than English, and materials must be accessible—this may mean making materials available in Braille or large type, having audio versions, and having materials both online and in easily-accessed neighborhood centers. Finally, materials should account for differences in learning styles and preferences. One subcommittee member suggested that a video of a person with dementia could be a valuable educational tool.

San Francisco also has a large lesbian, gay, bisexual, and transgender (LGBT) population, many of whom are in their late sixties, seventies, and eighties. While persons under age 50 tend to be more open about their sexual identity, many of those in their later years have remained closeted or return to the closet out of fear that their needs will not be met as they become unable to care for themselves. Some have partners but are often alone when the partner dies. Many do not have a younger friend or relative to serve as a caregiver should they develop dementia.

Dementia care is especially challenging for older adults who live alone. While some have forged new familial relationships, many are alone, relying on friends, neighbors, their landlord, the corner grocer, or their IHSS home care worker for essential care and support.

The work of education and prevention will involve a wide range of individuals and public and private entities. As discussed below, partnerships with existing public and private agencies will be needed to better disseminate high-quality information about dementia. Organizations one doesn’t normally think of in connection with health care or social services can play an important role. The Alzheimer’s Association’s Early Detection Alliance with corporate employers is a good example of an innovative program that leverages the private sector in helping to raise awareness of the early signs of dementia and how to obtain a diagnostic evaluation.

Nine key content areas were identified that should be part of comprehensive education and prevention efforts. Following are these areas with the corresponding key recommendations. More detail is provided in the following section. These content areas and recommendations are not listed in priority order.

o Risk Reduction – Key recommendation: Promote cognitive health and create a culture of “brain fitness” through mental stimulation, social engagement, physical exercise, and diet.

o Early Identification of Dementia – Key recommendation: Educate people about the signs of dementia, how they differ from normal aging, and when and where to seek a diagnosis.

o What To Expect as the Disease Progresses – Key recommendation: Offer diagnosed individuals, caregivers, and health care providers information about what to expect throughout the course of Alzheimer’s and related disorders, which will help with future planning.

o Services and Resources – Key recommendation: Ensure that caregivers are aware of and have access to community resources, training and support.

o Caregiver Wellness and Support – Key recommendation: Help caregivers understand the stresses inherent in caring for a person with dementia and provide resources for self-care.

o Disease Management for Mild, Moderate, & Advanced Dementia, Including End-of-Life Issues – Key recommendation: Effective management of early to moderate dementia can slow the advance of cognitive impairment, reduce the impact of co-morbidity, and delay entrance into institutional care. Informed medical management of late stage and end-of-life co-morbidities will decrease unnecessary treatment and ease the burden and suffering of the person with dementia and caregiver at the end of life.

o Advanced Care Planning – Key recommendation: Advance care planning can help foster greater patient and caregiver understanding of the patient’s medical condition, promote more patient-centered care, and ensure that a person’s preferences are honored at the end of life.

o Ethical Issues – Key recommendation: Create an ethics review committee/group to consult on difficult ethical situations involving persons with dementia.

o Emergency Preparedness and Safety – Key recommendation: Promote awareness of steps to take to prepare for an emergency and to address common dangerous behaviors prevalent in persons with dementia so as to avoid catastrophic outcomes.

Education and prevention efforts should target the San Francisco population, though certain interventions will need to focus on specific segments. For example, detailed information about disease management is most appropriate for professional and family caregivers. The general public should understand that dementia is a condition caused by diseases, how to recognize the signs of dementia, and ideally should have some information about available resources.

The subcommittee identified specific information needs for:
· Persons with dementia
· Informal caregivers as well as other family, friends, and neighbors
· Physicians
· Allied health care professionals
· Other professional caregivers, including those working in home care, assisted living, and nursing home settings
· Care managers
· Social workers and other social service providers
· Elder law attorneys
· Adult Protective Services
· Emergency and safety officers, including police, fire, and EMTs
· Gatekeepers such as postal workers and meal delivery services

In a limited funding environment, education and prevention strategies will have to be prioritized. Detailed findings and recommendations for each of these content areas follow.

Useful links:
– New Alzheimer’s report Here

– The Alzheimer’s Association is organizing multiple Memory Walks. Learn more and join Here. (Perhaps a good opportunity to organize a “walking book group” as Arthur Kramer suggested in the SharpBrains Guide?)
– The City of San Francisco interim document: 2020 Foresight-Strategy For Excellence in Dementia Care (pdf)

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