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Newcomer Information Revised(2)
I have updated this information and all links are active 8/20/2013
This is a list of links about information you will need. Most helpful
for you right now will be "Understanding the dementia experience"
which will give you an idea of what your LO is going through; and
"Communication skills" Which will help you to communicate in
ways which will avoid or decrease your LO negative behaviors.
It is also important for you to use the 800 number at the National
Alz. Assoc. if you run into problems we can't help with. It is 24/7 Helpline:
Understanding the dementia experience: https://www.smashwords.com/books/view/210580
explains why dementia patients are unaware of their problem http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf
Communication techniques for dementia caregivers: http://www.alzconnected.org/discussion.aspx?g=posts&t=2147497924
Guide to diagnosing and treating dementia: What your
doctor should do: http://dementia.americangeriatrics.org/
Bathing and Showering http://www.alzconnected.org/discussion.aspx?g=posts&t=2147491802
Help with brushing teeth and oral care: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=138
Urinary infections in people with
at skin/scabs: http://www.alzcompend.info/?p=233
Pain Scale to use when your LO is experiencing pain:
Eating problems http://www.alzconnected.org/discussion.aspx?g=posts&t=2147489263
Caregiver kitchen http://caregiver.com/kitchen/index.htm
Nutrition Matters – Finger Foods:
Alzheimer’s Org. UK
Finger foods for patients with dementia: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1614&pageNumber=5
When you need an in home dementia
caregiver; advice from the Alzheimer’s Association: http://www.alz.org/care/alzheimers-dementia-in-home-health.asp#choosing
Need help with
medication problems? The American Society of Consultant Pharmacists can find
you a geriatric pharmacy consultant in your area. They can work with your
physicians to correct doses etc. https://www.ascp.com/
When you start to look
at nursing homes, or assisted living facilities, begin with a call to your
local AD chapter and get a list of homes in your area. They do not usually make
recommendations. Then go to:
Guide to retirement living http://www.retirement-living.com/ where you will also get free information on nursing homes and
assisted living facilities in your area.
To check for problems reported during surveys,
go to http://www.medicare.gov/NursingHomeCompare/search.aspx?bhcp=1 which is
a government site listing all licensed nursing homes and the results of their
last surveys so you can get some idea of the quality of their care.
Also, when you select some, Google them along
with the word lawsuit to see if there are or were any significant problems that
Do select at least 3 to look at and visit them
at various times during the day and evening. Look at the residents with similar
levels of functioning to your LO. Do they look clean and comfortable? Are they
engaged in activities appropriate for their level of functioning? Ask about the
dementia training the staff receives. If possible, talk to other families who
have placed their LO at the facility.
Twenty Common Nursing Home Problems and How to
Solve Them. http://www.nsclc.org/wp-content/uploads/2011/02/20-Common-Problems-Nov-2010-Final.pdf
Elder abuse and neglect: http://www.alzconnected.org/discussion.aspx?g=posts&t=2147495517
Sexual Consent Guidelines Weinberg Center and Hebrew Home http://www.businessweek.com/pdf/hebrew_house_policy/sexualconsentguidelines.pdf
Stephanie , Thank you for this post,so much good information. I feel so overwhelmed between my mother with dementia and an adult child with Autism ,life can seem very lonely.
Thank you for these resources!
My husband was just diagnosed with early onset (57). He's barely got symptoms most would notice, but now's the time for planning and I'm already overwhelmed with what we need to do while he can help. Mostly there seem many details to address and the right people to work with to be found.
Thank you so much. Very helpful!!
I am very new to Dementia, as my mother was diagnosed while in rehab in December (2016), and they didn't tell me. I found out because of the list of medications they gave me to give to her doctor at an appointment. Needless to say, I called the doctor who diagnosed her and told him how I found out, and asked what type she had; he said it was senile dementia, but I believe it is vascular dementia based on what I have read. My mother is almost 83 and had a stroke in 2015, and her memory has not been the same since. I honestly thought her memory issues were due to old age -- now I am learning that I was wrong. I also am concerned that this could happen to me and/or my siblings. I was able to move my mom into an assisted living facility the beginning of this month, which she wanted, so I didn't have to fight her over that, thankfully.
I have had a Durable POA (with medical clause), Healthcare Surrogate, & Living Will for years, so I have all of that under control, and I have handled my mother's affairs for about 15 years now.
Any advise you can offer to me? What can I expect? Should I request any particular testing? Should it be done on a regular basis? Etc...