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Caregiver Information for New Forum Members
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
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
Skills for Working With People Who Have Dementia:
Here are some additional helpful links on
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
Look at the things available for babies to grasp, shake, rattle or just
feel. Yes, your LO is an adult, but these things are made to
stimulate and entertain. You might try Twiddle Muffs, or Twiddle
kittens and pups, (go on line to see the stores that have these, or make
one for her) activity aprons, etc.
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
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
A lending library sponsored by the
National Alzheimer's Association. It has a very large collection of
information on Alzheimer's for caregivers and
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.
a home health caregiver:
abuse and neglect:
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
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.
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.
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.
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.
to ask a nursing home. (From the Florida Agency for Health Care Administration
Reporting and Resolving Nursing Home Problems.
Dealing with the Guilt
From the Alzheimer's Association, US
From the Alzheimer's Association UK
OTHER HELPFUL SITES
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
Hoping this helps. Stephanie Z
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.
Wow! I think this is the most concise list of resources I've ever seen!
Thank you so much!
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.
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
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
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.
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?
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.
Thanks so much for the great links!
This is very helpful, Thank you so much Stephanie!
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.
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.
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 !
I went through every link and found them all to work. One was updating and I have temporarily removed. it.
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.
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?
Hi I am new to this forum.
My wife of 43 years has Alzheimer's and is currently in a nursing home
Sorry to hear that rlgiordano. What stage is your wife in? mid? moderate?