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Newcomer Information Revised(2)
Stephanie Z
Posted: Tuesday, August 20, 2013 1:18 PM
Joined: 12/15/2011
Posts: 4217


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: 1.800.272.3900

Understanding the dementia experience:  https://www.smashwords.com/books/view/210580 

 

Anosognosia 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 dementia http://www.disabled-world.com/health/aging/uti.php 

 

Picking at skin/scabs:  http://www.alzcompend.info/?p=233 

 

Pain Scale to use when your LO is experiencing pain:     

  http://prc.coh.org/PainNOA/Abbey_Tool.pdf 

 

Eating problems   http://www.alzconnected.org/discussion.aspx?g=posts&t=2147489263 

 

Caregiver kitchen   http://caregiver.com/kitchen/index.htm 

 

Nutrition Matters – Finger Foods:                                                  http://dietitiancentre.com.au/wp-content/uploads/2011/11/Nutrition-Matters-Aged-Care-September-2010-Final.pdf 

 

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 crop up. 

 

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 

 

Care Costs                                                                                            http://www.alz.org/care/alzheimers-dementia-common-costs.asp#ixzz1xOoxKQ1O 

 

Medicare coverage of skilled care   http://www.medicare.gov/Publications/Pubs/pdf/10153.pdf

 


Iris L.
Posted: Wednesday, September 25, 2013 12:47 PM
Joined: 12/15/2011
Posts: 18519


ttt
JayneW
Posted: Wednesday, February 19, 2014 12:54 PM
Joined: 2/11/2014
Posts: 71


Thank you for posting this
WDM Kay
Posted: Thursday, April 10, 2014 2:53 PM
Joined: 4/10/2014
Posts: 1


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.

Kay


ejkb
Posted: Monday, July 7, 2014 10:11 PM
Joined: 7/1/2014
Posts: 1


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. 


elainechem
Posted: Thursday, July 24, 2014 11:10 AM
Joined: 7/30/2013
Posts: 6064


ttt

 
We have more newcomers.

Latonbug
Posted: Monday, July 28, 2014 8:29 PM
Joined: 7/22/2014
Posts: 4


Thank you so much. Very helpful!!

 


Stephanie Z
Posted: Sunday, May 31, 2015 1:01 PM
Joined: 12/15/2011
Posts: 4217


I am reposting this, but cannot edit one error (Guide to Diagnosing and treating Dementia) and acknowledge the link is not working. When the powers that be fix it so I can, I'll add more.
Stephanie Z

Mimi S.
Posted: Tuesday, June 2, 2015 8:19 AM
Joined: 11/29/2011
Posts: 7027


Good list but links should be checked for currentness.
TessC
Posted: Sunday, June 21, 2015 1:44 AM
Joined: 4/1/2014
Posts: 5213


I see new members and thought Stephanie's list might help them.

Stephanie Z
Posted: Monday, June 22, 2015 7:12 PM
Joined: 12/15/2011
Posts: 4217


I'm sending this to the top again for several new forum members. Sorry i cannot edit it, much as I want to. Someday when this is fixed, I'll do so.
Stephanie Z

Stephanie Z
Posted: Monday, June 29, 2015 5:13 PM
Joined: 12/15/2011
Posts: 4217


ttt
fhprjen
Posted: Wednesday, July 1, 2015 10:34 AM
Joined: 6/25/2015
Posts: 26


Wish this could be pinned to the top somehow...

l'm new here - and I have to say that BY FAR the most helpful tools I have found in regards to understanding dementia/Alzheimers, I found right here in this forum.

These tools were also instrumental in assisting my family members in understanding what is happening to mom.

If you read nothing else, read Understanding the Dementia Experience (link in original Newcomer post here)... and please don't miss the Teepa Snow videos: https://youtu.be/sUgPm8RMa48?list=PLeu1xlHHkFCU_k85X1xBwjzayVIzNB12R

There is much comfort that comes from understanding how to interact with mom without upsetting her.

Thank you to EVERYONE on this forum for all you do to help others navigate through loving someone with dementia.

Cheranne
Posted: Wednesday, July 1, 2015 6:39 PM
Joined: 6/16/2015
Posts: 55


Thank you Stephanie Z- Haven't had any resources prior to this
CTfan13
Posted: Thursday, July 2, 2015 11:01 PM
Joined: 3/7/2015
Posts: 77


Thank you for all of the resources Stephanie! They are all a big help to everyone.
Stephanie Z
Posted: Saturday, July 4, 2015 10:33 AM
Joined: 12/15/2011
Posts: 4217


ttt
Angie1030
Posted: Tuesday, January 10, 2017 2:12 PM
Joined: 1/10/2017
Posts: 1


Hello everyone,

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...


 
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