Big Step Forward for Alzheimer’s Care & Research

January 24, 2014

Filed under: Alzheimer's — Alexis @ 2:57 PM

On January 17, President Obama signed a funding bill containing what the Alzheimer’s Association calls “an unprecedented $122 million increase” for Alzheimer’s research, education, outreach, and caregiver support.

The specifics, as outlined in the Alzheimer’s Association press release, are as follows:

• A $100 million increase for the National Institute on Aging for Alzheimer’s research, which will be added to what the National Institutes of Health (NIH) estimates will be $484 million in Alzheimer’s research funding across NIH in fiscal year 2013.
• A further $3.3 million has been provided to support Alzheimer’s caregivers.
• $4 million to train health professionals on issues related to Alzheimer’s disease.
• $10.5 million to expand the home and community based caregiver services.
• $4.2 million for outreach activities to raise awareness.
• The National Institutes of Health’s BRAIN Initiative will receive $30 million to support brain research that could impact several diseases, including Alzheimer’s.

This is an enormous step forward for families living with Alzheimer’s as well as for the future of Alzheimer’s care.

Read the full press release here.

Laughter & Music Can Be Better than Drugs for Dementia Patients

August 19, 2013

Filed under: Alzheimer's — Alexis @ 11:46 AM

There is a lot of movement right now in the US and around the world to move away from drug-dependency for keeping elder dementia in check. Well, here is a three-year study from Australia, with excellent news. Taken from the Sydney Morning Herald article:

“[The] nursing home participated in a three-year study that found weekly visits by clowns, plus the training of staff members to provide humour therapy, significantly reduced agitation among 180 residents in 17 nursing homes compared with a control group. The effect was similar to that of the average dose of risperidone, a drug used to reduce aggression and agitation among dementia patients, the Sydney Multisite Intervention of LaughterBosses and ElderClowns (SMILE) study found. It also avoided common side effects like stroke.”

Read the entire article here.

Department of Public Health Survey on Health Needs for People with Disabilities

May 20, 2013

This landed in my inbox. It took about 5 minutes to fill it out. Due date is May 31. Here are the details:

Help influence health care in Massachusetts! The Health and Disability Program, part of Office of Health Equity at the MA Department of Public Health (DPH) is conducting a health needs survey for people with disabilities in Massachusetts. The Office of Health Equity promotes the health and well being of minority populations, including people with disabilities throughout the Commonwealth. Results from the survey will be used to determine how best to address the current public health needs of the disability community. To that end, first, please take a few moments to complete the health needs survey yourself here.

DPH would like to get a broad range of respondents representing all the facets of the disability community, please forward the link to your friends and colleagues in the disability community and ask them to complete.

Who should complete this survey?

Residents of Massachusetts, over the age of 18 who have disabilities
Caregivers or guardians of adults or children with disabilities
Disability advocates
Staff at community based organizations or state or local government offices that serve people with disabilities
Academic researchers
Healthcare providers
Public health officials or professionals
Health and wellness promotion specialists
Health administrators
Health policy experts
We also invite participation by anyone else who has an interest in the health of people living with disabilities in Massachusetts. Please forward as soon as possible, as the survey link will only remain active until May 31, 2013. We look forward to hearing from you!

This is a voluntary and anonymous survey. The responses are compiled and we do not have knowledge of individual respondents.

Alzheimer’s Caregiver Conference Nov. 10

November 1, 2012

Filed under: Alzheimer's — Alexis @ 12:13 PM
This looks like a good conference for caregivers to learn, connect, share tips, and talk to other caregivers who “get it.”  This is a half-day conference in Concord, NH. 
Here is the registration link with more details.

Get the Right Diagnosis from a Neuropsychiatrist

February 14, 2012

Filed under: Alzheimer's — Tags: — admin @ 12:14 PM

We always hear the terms “dementia” or “Alzheimer’s”, but the fact is that there are many different types of dementias, each taking their own course over the lifetime, and each benefitting from different treatments.

If your loved one is confused or forgetful, etc., it is critical that you work with a neuropsychiatrist to nail down as best as you can the exact diagnosis. There are three major benefits to investing the time in finding a diagnosis:

1. You as a caregiver can learn how to modify your behavior to have the most positive interactions with your loved one;
2. You will know what to expect down the line; and
3. The doctor can prescribe the correct medications.

Typically the neuropsych will order an MRI. It takes time to come up with the right diagnosis, but the investment is well worth it.

Check out the Alzheimer’s Association at the Pru on December 10!

November 30, 2011

Filed under: Alzheimer's — Alexis @ 1:43 PM

Planning to be in town on Saturday night, December 10?  Check out the Pru – it will be lit up in purple!

Here is what I received from the Alzheimer’s Association:

This holiday season, The Shops at the Prudential Center and the Prudential Tower will shine a light on the Alzheimer’s Association during 31 Nights of Light. We invite you to join us on Saturday, December 10th as we “flip the switch” to light the top of Prudential Tower purple to honor the Alzheimer’s cause. Our light will be seen bymillions across Boston while reminding an entire city what the holidays are truly about…caring, sharing, family, and friends.

Join AlzTogether at 4:30 PM in the Center Court of the Shops at Prudential Center (near Club Monaco and to the left of the Customer Service Desk). We will “flip the switch” promptly at 5:00 PM followed by complimentary cookies and milk and the opportunity to mix and mingle with fellow Alzheimer’s Association supporters.Remember to wear purple!

 

This event is free, but registration is encouraged.

Visit http://alz.kintera.org/NightofLightRegistration to register now.

 

Frontal Lobe: Last In, First Out

December 8, 2010

Filed under: Alzheimer's — Tags: — Alexis @ 9:06 AM

The frontal lobe of the brain is responsible for impulse control, decision-making, planning out tasks, and the like. It doesn’t fully develop until we are in our 20’s. Essentially, it is the last part of our brain to mature. If you recall the questionable decisions you made in your teens and college years, you will most likely agree.

Are you caring for someone with dementia? Decreasing ability to control impulses, make decisions, and plan tasks – sound familiar? Many dementias attack the frontal lobe. Interesting, isn’t it?

Research at Brandeis on Alzheimer’s & Parkinson’s

June 30, 2009

Filed under: Alzheimer's — Tags: , — Alexis @ 1:13 PM

Researchers right in our own back yard at Brandeis University in Waltham are conducting fascinating research on the causes and prevention of Alzheimer’s, Parkinson’s, Huntington’s, and other neurological disorders.  You can watch a lecture by Professor Petsko here.  He introduces some intriguing research concepts – one idea they are exploring is whether all of these various neurological disorders are really one and the same – perhaps they are all different manifestations of one underlying disease or disorder, since there is so much about them that overlaps.

His practical advice confirms what we already know (but we all need to hear again) – eat right, eat fish, exercise your body and brain, and keep your blood pressure low.

HBO’s The Alzheimer’s Project: Grandpa, Do You Know Who I Am?

May 19, 2009

Filed under: Alzheimer's,Caregiver Issues — Tags: , , — Alexis @ 3:51 PM

This weekend I watched the film on grandchildren caring for grandparents with Alzheimer’s.  I was floored by the patience and persistence these kids displayed.

One theme that the film highlighted with “staying in the moment.”  This is something we all did as kids (remember focusing on a ladybug crawling up a blade of grass for minutes at a time, oblivious to anything else in the world?), but we lose as we mature.  Turns out we end up back there towards the end of life.

Spending time with an Alzheimer’s patient sometimes means playing cards or other games, discussing what they see out the window at that moment – and not discussing what happened this morning or what you will be doing tonight.

This also touches on the theme of “fiblets” – the notion that you cannot change the reality of an Alzheimer’s patient, so you go with their reality instead.  They are in their moment – go and join them there.  My favorite Alzheimer’s coach, Beverly Moore, tells this story:  It is about 3 p.m., and a woman she is working with is convinced that Johnny should be coming off the school bus any minute.  There is no way to convince her that she is 85 and her little boy is a 60 year-old accomplished engineer.  Instead, Beverly agrees and steers her into the kitchen to make tea while they “wait for the bus.”

It is a shift in the way we are used to interacting with people, but if you can force yourself to return to your childhood habits and “stay in the moment” you can turn what could have been a frustrating experience into some joyful time spent with your loved one. 

HBO’s The Alzheimer’s Project: Caregivers

May 18, 2009

This weekend I watched the film Caregivers (don’t you just love On Demand?).  One theme that jumped out was the isolation that caregivers suffer.  Several of the film’s stars (I think that’s a good name for them) talked about how very quietly the invitations to events and gatherings stopped.  Not only does this damage the patient, but even more so the caregiver who needs more than ever to maintain her connections to the world.

This happens with families with special needs children, as well.  They lose their friends and even family as their child grows past the infant years. 

It all comes down to lack of knowledge.  Very few, if any, of us innately know how to interact with a person with mental deficits or behavioral issues.  The good thing is, it’s not too hard to learn. 

If you have a friend, neighbor, or family member who is caring for an individual with Alzheimer’s, another form of dementia, behavioral issues, mental retardation, Turret’s Syndrome, or any other type of disability that affects the mind, please – don’t shy away from them – they need you in their life.  Just ask your friend – “I would love to spend the afternoon with you, please tell me what to expect from Vanessa, and please give me some tips on how to interact with her.”  There are also so many books and websites devoted to various special needs and highlighting skills for interacting with the special needs person.

And if you are the caregiver and you have noticed that your friends and family invite you out less frequently – call them up, explain that you understand why they have backed off, and then ask if you could describe a few tips for how to spend time with your loved one. 

All it takes is a little bit of knowledge, patience, and a willingness to try something new.  

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