Seven Websites For Families & Individuals

Last night my daughter and I attended a program sponsored by the local Alzheimer's Association and the not for profit company that managed Mom's care in the Skilled Nursing Unit where she lived for a little over two years and where she passed through this life.

Mixed feelings about the program in general and others I've attended through this company and the association.

The Marketing Director of the group of senior service providers mentioned this was the sixth in a series of presentations. We've attended about half. The take away is a grain of information but it keeps us informed as to the level of capability of both these groups and also to the pulse of the people faced with the challenges of growing older and those caring for a Senior.

Here's what we would teach individuals and families:

Lesson #1
All Dementias are not the same and they do not progress the same.

Here's one of many resources I've read for guidance. It's not totally up to date esp regarding Lewy Body Dementia as the citations do not report the rapid growth of the discovery of LBD in our aging population as our abilities to diagnose the varying forms of Dementia evolves:  http://www.helpguide.org/elder/alzheimers_dementias_types.htm

Lesson #2
Even though there are is no exact way to distinguish among some Dementias (esp Frontal Temporal, Alzheimer's and Lewy Body Dementia), behaviours are based on brain function or dysfuntion and that is what should be the focus of providing care.  Suggest you take a tour of the brain on the Alzheimer's Association website: http://www.alz.org/alzheimers_disease_4719.asp

Lesson #3
Those who are challenged by Dementia are human beings and deserve respect, care, consideration and understanding first and foremost.

Here's a link I just discovered from outside the United States, in English, that many facilities should read and follow more closely:  http://www.dementiasa.org/advicesheets/english/Understanding%20and%20Respecting%20the%20person%20with%20dementia%20ENGLISH%20C.pdf 

Dementia is a worldwide challenge and as more countries develop and populations age, it becomes an international challenge for human rights.

Lesson #4
Know your rights in a Nursing Facility. Here's a website I just "stumbled across" I wish I'd found prior to my Mom's death and prior to her entering the first facility.

Knowledge is power and this paper is worth reading all the way through, getting a copy for reference and ensuring you pass along this important information:
http://www.nsclc.org/wp-content/uploads/2011/02/20-Common-Problems-Nov-2010-Final.pdf


Lesson #5
The presenter of last night's program documented his wife's advancing Dementia. We believe you should also document any challenges or problems you witness or your loved one talks about or you observe.

Take notes, take pictures and take videos of your loved one who lives in a facility. If you see something happening that's questionable, document it. You may not have the right to photograph or video another resident but you can make notes including the name of the person whom you think has violated the rights of the resident, caused possible harm to their person or caused any type of neglect or abusive situation.

Review your loved one's rights in your State's Rules and Regulations for Skilled Nursing Facilities and if they have them, for Assisted Living and even Independent Living.

Suggest you start here if you live in the United States: 

http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/NHs.htmlifhttp://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/NHs.html 

Lesson 6:
Every Nursing Center should have both a Resident's Council AND a Family Council.  Start a Family Council if there isn't one and learn your rights as a member at this website and the one above (which has a section on Family Councils):  http://www.theconsumervoice.org/familymember/family-council center#Family_Council_Rights_and_Federal_Laws Regulations

Added Comment 4/08:  The Nursing Home Reform Law of 1987 provides both resident councils and family councils become established in "Nursing Homes", places we now refer to as Skilled Nursing Facilities (SNF's) or Long Term Care Facilities. Here's a link through another good general website resource:
http://www.theconsumervoice.org/advocate/issueindex/archivedissues/obra

CHECK IT OUT:  In Missouri, there is NO mention of a Family Council in the Rules and Regulations for Long Term Care/Skilled Nursing Facilities BUT there is a mention of Resident's Councils.  How about your State?  Care to share by letting us know what States mandate establishment or facilities that do have these councils?