Home Safety Checklist

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Caregiver Information for New Forum Members
Stephanie Z
Posted: Wednesday, December 30, 2015 5:37 PM
Joined: 12/15/2011
Posts: 4218


This is an updated (June 14, 2019)  list of links about information care givers will need. I check it and add to it on a regular basis. If you find something you would like to add, let me know.     

    The first is a very helpful article is:   "Understanding the dementia experience"  It will give you an idea of what your LO is going through, and what they need to have a good quality of life.  "Communication skills"  demonstrates better ways for you to communicate with the person who has dementia by encouraging  their cooperation  and reducing  the chance of negative behaviors.

   There are many other links included here which will be more applicable, and very helpful as your LO's dementia progresses.

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. The 24/7 Helpline is: 1 800 -272- 3900  Ask for a care counselor. This service is free.

Understanding the dementia experience


Communication Skills for Working With People Who Have Dementia:



                 Here are some additional helpful links on dementia care  


Guide to diagnosing and treating dementia  



What to ask the doctor about Alzheimer's







The differences between Vascular Dementia and Alzheimer's  



 Stages of Alzheimer's




Stages of Lewy Body Dementia





 Anosognosia explains why dementia patients are unaware that they are ill:



Delusions and Hallucinations.

 The difference between delusions and hallucinations is that delusions are beliefs that are false (for example: my family is stealing from me) while hallucinations are sensory  (examples include: "I SEE people in my room. I HEAR voices. I FEEL them crawling on me)  



 Excellent Resource on Vascular Dementia 


 A Form of Dementia that Affects Vision: Posterior Cortical Atrophy



Activities for Mid and Late Stage Dementia 



Get some PVC pipe and cut it into about a dozen uneven pieces. Add some elbows. Great to put together and pull apart.

For people who liked fishing, an old fishing box with different kinds of lures (hooks clipped off) to touch and feel and admire.

A board with several locks and keys attached to open and fiddle with.

For the later stages, windup toys, things to squeeze, rattle or manipulate in other ways.

Washing the family car. The results will be far from perfect, but that's OK

Bubble blowing

Don't forget the mid-day snack. Your LO may enjoy making and eating it.


Sensory stimulation:  put a few cotton balls in old pill containers (the kind you get from the pharmacy) put a few drops of vanilla, chocolate extract, lemon extract, etc.  or even one or two perfumes in them and let your LO sniff at them.  Try spices like oregano, basil, mint. etc.

  How about music. Try different sounds to see if your LO likes them. There are wonderful sounds in "relaxation" type music. Also try old music from the 40s and 50s.  I am an nurse who worked for years on dementia units. My residents LOVED gospel music, especially the Statler Brothers.


Old Time Radio Shows on CD:  



Touch - a bowel of rice to run their fingers through or petals from flowers to touch and smell, Does a neighbor have a dog or cat they can pet?  Or consider getting one of the animated dogs or cats that look real.  Bring  in some snow when the weather gets colder. Let your LO experience it once again. You can think up more based on her background.

The idea of sensory stimulation is to help the person remember what things feel like or smell like. It might trigger a memory and you can gently ask and pry a bit to get your LO one to remember.  Same with the music. I had residents who could not string 3 words together, but remembered the lyrics to some of the gospels or older songs.

Try blowing some bubbles around them and see if they catch their attention enough to poke at them.

Let your LO wind yarn if they can, or sort socks and fold wash cloths.

If your LO is a female, give her a manicure and polish her nails. She might like looking at them. If not, you can remove the polish.

Give your LO seed catalogs to look through. Loads of great pictures of flowers.

If you do find something they like , don't forget that they have a memory problem. You can use the same thing over and over again.

When wandering is a problem

     Many people with dementia go through a stage when they wander. It is up to the facility or family at home, to provide a safe wandering area. It is often helpful to devote a room or area to things the person likes to rummage through or look at. Pictures, books, items to touch and take with them as they wander.

     Make sure there are no obstacles in the way of the person's wander path. Think about taking the person on walks outside, especially if a patio or backyard is available. At home, doing things like walking the dog, or even helping with tasks like raking or washing the car, help expend energy and may reduce some of the need to wander.

     Remember, wandering is a "phase". It will not last long. Keep your LO safe and keep the environment interesting.   

The Importance of Fostering Independence



Disinhibition and disturbing behaviors 



Taking the car keys, Tepa Snow videos: 

How not to take the keys:  https://www.youtube.com/watch?v=9oVXP7uezkA

How to take the keys:  https://www.youtube.com/watch?v=gr_47LOFp7M


Drug Comparison - looking for interactions



 The American Society of Pharmacy Consultants.  They will help connect you with a pharmacist in your area to review your LO medications for doses, interactions, use of best drug, etc.



  A list of drugs that should not be crushed  



Greenfield Library 

A lending library sponsored by the National Alzheimer's Association. It has a very large collection of information on Alzheimer's for caregivers and researchers.                                     https://www.alz.org/help-support/resources/virtual_library/online_catalog                                                    


  Bathing and Showering  





     Unfortunately I've seen contractures and what they can do to a person. What you need to know is that the tendons around joints are like rubber bands. They stretch and contract to help us move. When someone is in late stage dementia, or has another illness that causes them to spend a lot of time in bed, or perhaps immobile in a WC, the tendons around the  joints start to shrink and will no longer expand to allow for full movement of the joint. For example, the elbow; We can normally extend or bend our arms. Contractures around the elbow cause the arm to be permanently bent, getting worse over time. If one tries to straighten the elbow, there will be resistance and pain. Contractures can occur anywhere there is a joint. So contractures can cause restricted movement, be very painful, and even add to the possibility of bed sores on the boney areas, such as the elbows.

     Contractures can and should be prevented. Doing this will help the person to be more mobile and avoid the pain they can cause. Prevention is simple. Performing PASSIVE range of motion on all joints gently once or twice a day can help. Here is a good youtube video explaining how to do this. There are more on youtube as well. https://www.youtube.com/watch?v=t6hE_ntz4Ho As you can see it only takes 5 or 10 minutes to do this and it is done gently, no force is used.

     If a LO gets contractures in a NH it is most likely due to poor nursing care. Complain and demand a PT consult for range of motion exercises.   If it happens at home, perhaps the caregiver has not been taught about contractures, but even if it is starting, doing the passive range of motion exercises can help reduce further contractures and pain.


Selecting a home health caregiver:



  Elder abuse and neglect:


When You Need to Take Your LO to the Hospital



Incontinence diaper disposal. No odor:


Help with dental care



 How to determine if your LO has pain. Use the Pain Scale:


Picking at skin/scabs


Intimacy and Sexuality: Resources for Dementia Caregivers


Finding a Memory Care Unit:

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 in your area.

 You can also go to: Guide to retirement living:

https://www.retirement-living.com/  where you will get free information on nursing homes in your area.

Then go to the government site called Nursing Home Compare:


 and get the results of their last surveys so you can get some idea of the quality of their care.

 You can also do a search to see if your state has a site on Assisted Living Compare. Some states do.

When you select some, do a search 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. DO NOT expect nursing homes to look like  ALFs. The decor will be less attractive, but in a good nursing home with a dementia unit, can provide excellent dementia care along with meeting any physical care needs.

Once you have picked one, you will want to visit at least 3 times. Once during meals to see what the residents are eating (see if you can eat there as well), once on the evening shift, and once during activities to see how many people attend or have other things of interest available to do.                      

Questions to ask a nursing home. (From the Florida Agency for Health Care Administration 

  • When was the facility last inspected?
  • What deficiencies were cited, if any? Ask to see the last inspection report.
  • How many residents does a nurse care for during a day, evening, or night shift?
  • How many residents does a nurse's aide care for during a day, evening, or night shift?
  • What arrangement does the facility have for medical services such as doctor visits and specialized equipment and therapies?
  • What transportation arrangements does the facility have for the residents?
  • What special training does the staff have?
  • What are the policies for deposits, refunds, and bed holds?
  • How does the nursing home safeguard against loss of residents' personal belongings?
  • How much advance notice does the facility provide before increasing charges for regular or additional services?
  • What types of activities are included in the facility's social program? Ask to see the activity calendar.
  • Does the nursing home have a program to limit the use of physical restraints?
  • What are the designated visiting hours? Can exceptions be made for special needs?
  • When and how often the facility performs assessments for attaining Information regarding the resident, including information for the Minimum Data Set (MDS)?
  • What are the procedures for Preadmission Screening and Resident Review (PASRR)?

 Reporting and Resolving Nursing Home Problems.



  Dealing with the Guilt

 From the Alzheimer's Association, US   


From the Alzheimer's Association UK


 From Australia




Urinary infections in people with dementia


 Australian Site: Nutrition Matters –  Finger Foods:



Recommended Reading by Forum Members 

 The 36 hour Day  Nancy L Mace and Peter V. Rabins

Creating Moments of Joy for the Person with Alzheimer' or Dementia. Jolene Brackey 

Coach Broyles' Playbook for Alzheimer's Caregivers: A Practical Tips Guide. Frank Broyles 

Kisses fore Elizabeth: Common Sense Alzheimer's and Dementia Care. S Zeman RN MSN 

A Caregiver's Guide to Lewy Body Dementia.    Oct 20, 2010
by Helen Buell Whitworth "MS BSN" and James Whitworth
They're YOUR Parents too! How siblings can survive their parents' aging without driving each other crazy by Francine Russo.

  Hoping this helps.
 Stephanie Z

Posted: Wednesday, December 30, 2015 5:48 PM
Joined: 4/25/2015
Posts: 406

Thanks, Stephanie...I see a lot of new people this week and so glad they found the board.

This is excellent info and I need to read some of the ones also.




Chris F.
Posted: Thursday, December 31, 2015 9:44 AM
Joined: 12/29/2015
Posts: 79

I'm brand new here and am most thankful for this information. My mother was diagnosed with mid-stage AD in July, and I've been researching and researching. I still have so much to learn.
Posted: Thursday, December 31, 2015 10:18 AM
Joined: 12/29/2015
Posts: 15

Thank you--the eating/appetite loss information is helpful to me right now!
Posted: Wednesday, February 3, 2016 1:58 PM
Joined: 1/7/2016
Posts: 10

Wow!  I think this is the most concise list of resources I've ever seen!

Thank you so much!

Posted: Wednesday, February 3, 2016 3:38 PM
Joined: 11/19/2015
Posts: 1004

Stephanie,  Thank you so much!  I've been on here a few months and don't remember seeing this so I really appreciate you posting!  I'm going to bookmark it!
Posted: Thursday, February 4, 2016 9:52 AM
Joined: 1/30/2016
Posts: 2

Thank you! How do we connect with the National Alz Councelors mentioned in one of the posts?
Stephanie Z
Posted: Thursday, February 4, 2016 4:45 PM
Joined: 12/15/2011
Posts: 4218

Macy, Call the hot line at: 1.800.272.3900  Ask for a care counselor. They are supposed to be there 24/7 but it is better to call during the day. You can also call your local Alzheimer' Chapter and ask for their counselor or social worker.

 Stephanie Z

Posted: Tuesday, February 9, 2016 8:37 PM
Joined: 1/15/2016
Posts: 35

Thank you for this list!
Posted: Thursday, February 18, 2016 8:00 PM
Joined: 6/27/2013
Posts: 22

Thanks, Stephanie Z.  I had you in mind when I said that there was lots of information for new folks here.  Much appreciated!
Posted: Thursday, February 18, 2016 8:01 PM
Joined: 6/27/2013
Posts: 22

Thanks Stephanie Z.  I had you in mind when I mentioned all the great information for newcomers to the boards.  Much appreciated !
Posted: Saturday, February 20, 2016 1:04 PM
Joined: 12/7/2011
Posts: 1736

your book: Kisses for Elizabeth: A Common Sense Approach To Alzheimer's and Dementia Care (Volume 1)

is terrific and a must read. Any new books in the pipeline?

Your past posts are so good please re-post for those have not had a chance to read them





Posted: Tuesday, February 23, 2016 10:16 PM
Joined: 2/23/2016
Posts: 2

Hey, I'm new here. My Grandmother has Alzheimer's Dementia and has been bedridden for almost 2 years now. She can't do anything for herself. We feed her, bathe her, change her diapers, the whole 9 yards. She hasn't been able to stand or even sit up for almost 2 years. I just wonder how long she can go on like this? She has no quality of life and at this point I'm afraid my Grandfather is going to pass from the stress before she does. He has help everyday, Hospice just started coming back in after about 6 months of not coming. She recently had a stomach virus so they came to re-evaluate her and measured around her arm and I guess she had lost weight. But having a stomach virus will do that. The last couple of days she has been talking non stop all day. You can't understand most of what she says, but you can make out some of it. This is VERY unusual for her. She usually just sleeps all day and doesn't say anything. Tonight she asked to see my Dad, which is a whole different story. He doesn't come around much. She hasn't seen him in months. My Grandfather got upset at him and told her he wasn't coming and you could tell she was sad because she just laid her head down and went to sleep. As soon as he came in her eyes lit up. She smiled so big and then went to sleep. She usually doesn't remember who anyone is so this has me concerned maybe she has been waiting to see my Dad? Maybe she's been holding on for that?
Posted: Friday, February 26, 2016 10:51 PM
Joined: 2/26/2016
Posts: 19

Hi Stephanie, I just joined this site last night. The references you have shared look very helpful. I see that someone mentioned "bookmarking" your post for future reference. I'm hoping someone can provide me some guidance on how to do that. Thank you.
Posted: Sunday, February 28, 2016 6:42 AM
Joined: 2/28/2016
Posts: 4

Good morning, I am new to this site. My Mom was recently diagnosed (Oct) although I suspected for sometime. I still work full-time, but will retire in May to assist with her care. I will be moving her to "independent living" in March as she now lives alone and can't really manage that any longer.

While she is not fighting me on the move, she is up and down about the event. She is fighting me about her 2nd car. (She really needs to stop driving all together, but that is an issue for another day).

I'm really searching for resources and interested if any of you belong to/attend an actual support group?

I'm the primary caregiver (with financial responsibility). My Mom has a beau, but they do not live together.

Thanks in advance, JD

Stephanie Z
Posted: Sunday, February 28, 2016 10:05 AM
Joined: 12/15/2011
Posts: 4218

Hi painter,

     Welcome to the group. When you wish to ask a question it is a lot better to go to the top of the forum and hit "add topic" that way you will get a lot more responses just for you.

The forum is a wonderful "support group" of sorts as you can find information, suggestions from families who have LO with dementia, and lots of support.  However, if you are looking for a face-to-face support group, call your local Alzheimer's Association Chapter and they can let you know what is in your area.

Stephanie Z

Posted: Saturday, March 12, 2016 7:29 PM
Joined: 2/23/2016
Posts: 2

It's been a rough week. My Grandma has came down with some kind of infection, and the nurses can't pin point what it is. She ran a fever of 101 for a day. She was unresponsive the entire day that day. It had us all thinking that was it. But she hasn't been as "no responsive" these last 2 days. She is really hoarse, has a cough, and it totally unplugged to anything around her. The only thing she's surviving on now is ice cream and pudding. We can't get her to drink anything to amount to much. My Grandpa told me tonight he doesn't think it will be long now, but we've thought that before and she's still here. The Hospice nurse said if nothing major happened she could continue like this for another 6 months, but I seriously don't think she will. She has taken a HUGE decline in the past week. She not gets confused about drinking out of a straw. Sometimes she will suck on it but won't get anything, others she blows back into the straw, and then there's her clinching her mouth shut. My Grandfather up until now has been very positive about it all, but I think he's really getting down and worried she won't make it to much longer. It really would be a blessing if God just went ahead and took her, because she has no quality of life whatsoever. This is all just so much and hard to take in. We all knew this day would come but the Not Knowing is what's the worst. Not knowing if she's suffering in any kind of way, not knowing how long we still have with her.
Posted: Friday, March 18, 2016 2:03 AM
Joined: 3/17/2016
Posts: 16

Thanks!  Very helpful.  My MIL lived in another state early in her disease and never pursued a diagnosis.  We have always just been told she has dementia.  I don't know when she was diagnosed but I had to put a date on profile.  I tried to think back to when she started getting forgetful.  She and FIL moved here 3 years ago.  Things had progressed by then, but have gotten much worse in last 6 months.  We are having first MRI next week.  Recent extensive exam and some kind of scan at eye doctor indicates stroke since last tests 18 months ago.  

You seem to know so much.  I am concerned about her and how she will react to MRI.  I know people without dementia have problems with MRI anxiety.  Hospital has agreed to allow my husband in with her during MRI.  Any other suggestions to minimize stress and help her through it?

Posted: Friday, March 18, 2016 1:15 PM
Joined: 2/10/2016
Posts: 38


That is very useful information. Thank you for the time and energy in your listings.

Does or has anyone ever used CARE.COM for caregivers?  I am seeking 24/7 caregivers in NC and need some thoughts.


Posted: Sunday, May 15, 2016 5:49 PM
Joined: 3/24/2016
Posts: 44

Thank you Stephanie - that's great information.  Would you know if there's any way to 'save' interesting posts so we can get back to them easily or do we need to copy and paste them to a Word document.  Many thanks again!
Posted: Sunday, May 15, 2016 6:55 PM
Joined: 5/11/2016
Posts: 5

Great information. Thank you
Posted: Tuesday, May 31, 2016 11:04 AM
Joined: 5/16/2016
Posts: 95

Maybe this thread should be anchored to the top.
Posted: Tuesday, May 31, 2016 3:19 PM
Joined: 5/29/2015
Posts: 44

I read the Understanding Dementia article back when my sister was first diagnosed 3 years ago, and thought then it was an excellent article. I just re-read it again today, and it was so helpful in understanding where my sister is now. I agree this should be tagged at the top of the forum. Excellent info.
Posted: Saturday, June 4, 2016 2:09 PM
Joined: 6/1/2016
Posts: 1

Thanks so much for the great links!


Posted: Saturday, June 4, 2016 6:31 PM
Joined: 5/20/2016
Posts: 22

This is very helpful, Thank you so much Stephanie!



Posted: Monday, July 11, 2016 9:38 PM
Joined: 7/11/2016
Posts: 2

I'm new here. My 85 yr old Dad was diagnosed with Alzheimer's. He and my Mom live an hour and a half from me. Mom is currently taking care of him, but she has health problems. They've always been so independent and never want to worry me or ask for anything. I'm so worried about them and I want to help in anyway I can. I appreciate any advice, info, ideas.

Thank you!


Stephanie Z
Posted: Tuesday, July 12, 2016 10:48 PM
Joined: 12/15/2011
Posts: 4218


Welcome to the forum, The information on this thread should be very helpful, but you will probably want more advice from the other families on the forum.

     Please check the new messages now, as I have moved your post up so you will get a better response. Next time, please push the green new topic button at the top to ask your question.

Stephanie Z

Posted: Tuesday, July 12, 2016 11:12 PM
Joined: 7/6/2016
Posts: 11

Thank you Stephanie,

I'm new to this site and just recently coming to terms with my dad's Alz. Thanks for all this useful info !

Posted: Thursday, August 18, 2016 2:34 PM
Joined: 7/29/2016
Posts: 319

I have a question: if a hospice person were to visit my mother to evaluate her, would he/she have to tell her what he was doing and where he is from?
Stephanie Z
Posted: Thursday, August 18, 2016 9:19 PM
Joined: 12/15/2011
Posts: 4218


     I went through every link and found them all to work. One was updating and I have temporarily removed. it.

Stephanie Z


Posted: Sunday, August 21, 2016 12:05 AM
Joined: 7/11/2016
Posts: 2

Thanks! - Stephanie Z
Posted: Sunday, August 21, 2016 6:42 PM
Joined: 8/17/2013
Posts: 11

Hello, Stephanie. I sent you a Connection invitation. I hope that wasn't inappropriate but I have a question I am hesitant to post. Maybe you can guide me to the right resource. 


Posted: Tuesday, August 23, 2016 12:25 PM
Joined: 8/17/2013
Posts: 11

Oh, Stephanie.. I accidentally deleted our connection when I clicked on the Delete button under your name thinking it was a message.    Please re-accept?  


Posted: Sunday, November 6, 2016 10:18 AM
Joined: 11/29/2014
Posts: 2

Hi I am new to this forum.

My wife of 43 years has Alzheimer's and is currently in a nursing home   

I am having a hard time with this. I want to take her home for home care
But everyone says no. We where always as one. I feel only that I am half of a person
The other half is her. I don't think I could live with out her 
I am very isolated and all I do is think of her
Posted: Monday, November 28, 2016 6:05 PM
Joined: 11/23/2016
Posts: 10

Sorry to hear that rlgiordano. What stage is your wife in? mid? moderate?

I'm new here as well, and the caregiver info is very helpful, THANK YOU!

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