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.

Get the Right Diagnosis from a Neuropsychiatrist

February 14, 2012

Filed under: Alzheimer's — Tags: — Alexis @ 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.

Howard Gleckman’s Caring for Our Parents

October 23, 2009

I’ve been reading Howard Gleckman’s book, Caring for Our Parents, in which he examines the long-term care system of today and the future. Essentially, if we keep on doing things as we are now (expect people to use up their savings to stay at home or in assisted living, have Medicaid pay for nursing home – with a few other public programs thrown in here and there), then the elderly of the next few decades are in for quite a shock.

My conclusions are these:

1. Write a Health Care Proxy and a Medical Directive, or Living Will My version of this is to give clients Your Way, a fantastic workbook that helps you spell out to your family what care you would want in various end of life situations. Long-term care is astonishingly expensive, as you know if you are currently coordinating at-home care or other support for your parents. If you don’t want that kind of money spent on you – if you don’t want certain procedures done or decisions made – tell your family now. During an emotional crisis, it will be very difficult for them to turn down a medical option without you having previously given them that moral permission.

2. Get thee to a financial advisor. The current long-term care system depends in large part on the consumer paying her own way. The Boomers are notorious for not saving money. Work with an advisor to see what kind of cushion you can build up.

3. Get involved in politics at the grass-roots level. As currently structured, the Social Security, Medicare, Medicaid, and long-term care insurance systems are projected to crash in on themselves. Additionally, Boomers don’t have the numbers of children that their parents do to share the workload. Your parents will be OK – an elder law attorney can help them stretch out their assets to stay at home for as long as possible. But the Boomers will not be OK. The system needs to be overhauled, dramatically. I don’t have answers, but Gleckman outlines the models that some other countries use. I’m sure there are other brilliant policy makers in the US coming up with excellent ideas, as well. But ideas become law only if the Boomers use their sheer numbers to push the system to provide the care they expect. Without big change, the Boomers will be in for quite the surprise in their frail old age.

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.

Caregiver: Care for Yourself, Too

June 1, 2009

Filed under: Caregiver Issues — Tags: , , — Alexis @ 9:34 AM

Caregiver burnout is a dangerous side-effect of dedicating your time and energies to the care of a loved one. All the physical activity, combined with the worry, isolation, and frustration, make for a dangerous recipe. Families frequently come to me when Mom got sick from the exhaustion of caring for Dad.  Another common scenario is a child becomes worn down and finds herself spending lots of time in doctors’ offices for her own ailments, and the family asks me to make different arrangements for the parents’ care. 

It’s hard work caring for another – physically, emotionally, mentally. If you are a caregiver, you must take time for yourself. Go for walks, take an art class, join a support group where you can let off steam and also get some ideas and encouragement from other souls in the same boat. To take time for ourselves, most of us need it to be compulsory: so sign up for an exercise class or a walking group, or find your own buddies to cycle with a few mornings a week. Whatever the activity, if you’ve scheduled a time and others are expecting you, it’s more likely you will follow through. 

There are many places to look for support and ideas, just spend a few minutes online and you will find them. One good place to start is the Alzheimer’s Association Caregiver Stress Check. Joining a caregiver support group is an excellent thing to do and can often result in long-lasting friendships. Call your local senior center for a list. 

Most importantly, get outside! It’s the perfect time of year for that. Take good care.

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.  

ARTZ is Artists for Alzheimer’s

May 13, 2009

Filed under: Alzheimer's — Tags: , , — Alexis @ 5:05 PM

A ground-breaking group of artists has put together training for museum staff to allow them to host small groups of people with Alzheimer’s along with their families and care partners.  Research shows that people with AD can tap into long-held memories through an art medium.  Spending time with, or, creating art, can bring emotions to the surface that the individual has not otherwise been able to convey.  Working with art can even help reduce some of the negative psycho-behavioral symptoms that can accompany AD.

Through a grant from the McCance Family Foundation, ARTZ will be conducting programs at Eastern Massachusetts museums on Tuesdays throughout the spring and summer.  Check out the schedule here.  

So get out, enjoy some art, and see a new side to your loved one!

HBO’s The Alzheimer’s Project

May 12, 2009

Filed under: Alzheimer's,Uncategorized — Tags: , — Alexis @ 9:40 PM

Have you been watching this series?  So far I’ve only been able to catch the film on scientific research.   They are describing all sorts of research and discoveries occurring in the field, all exciting and cutting-edge stuff.  The field is so young, and there is such an abundance of research activity testing a range of theories.  And the whole time I’m watching, I am thinking that five years from now people will watch this in reruns and laugh at how primitive it all was.  I expect that our research will bring us to a very different place in short order.

I’m looking forward to watching the film on caregivers.  You can stream each of the films at The Alzheimer’s Project website.   You can also see them on Comcast’s On Demand. 

Is Your Home Care Agency Appropriate for Alzheimer’s Care?

February 25, 2009

We are lucky on the South Shore to have so many agencies supporting seniors who continue to live at home.  Among these are home care agencies, which are the companies that provide home health aides and companions.  If you are considering a home care agency to care for a loved one with Alzheimer’s, look for one that has put some time and effort into training its employees to work with this population. 

North River Home Care is a family owned agency based in Norwell, and they are the only home care agency in our area to hire StilMee (a/k/a Sweet Grapes), the Alzheimer’s coaching company, to train staff.  Sweet Grapes is another fantastic locally owned company, headed by the indefatigable Beverly Moore of Quincy.  North River’s owner, Heather Kenney, has hired Beverly not only to train her 60 caregivers, but to provide weekly support and feedback to the caregivers who provide live-in care to Alzheimer’s patients – perhaps one of the toughest jobs an aide can have. 

If you are looking for an agency to care for a family member with Alzheimer’s, be sure to ask what specific training and ongoing support the aides receive. 

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