PLEASE NOTE
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
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
Communication
Skills for Working With People Who Have Dementia:
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147521813
Here are some additional helpful links on
dementia care
Guide
to diagnosing and treating dementia
https://www.caregiver.org/diagnosing-dementia
What to ask the doctor about Alzheimer's
https://www.alz.org/alzheimers-dementia/treatments/questions-for-your-doctor
https://www.verywellhealth.com/dementia-diagnosis-questions-98857
https://blog.arborcompany.com/making-dementia-care-plan-10-questions-to-ask
The differences between Vascular Dementia and Alzheimer's
https://www.verywell.com/the-differences-between-alzheimers-vascular-dementia-98750
Stages of Alzheimer's
http://www.alzheimers.net/stages-of-alzheimers-disease/
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
Stages of Lewy Body Dementia
http://www.lewybodydementia.ca/lewy-body-dementia-phases-and-stages/
https://www.verywell.com/lewy-body-dementia-stages-progression-98735
Anosognosia explains why dementia
patients are unaware that they are ill:
https://mytrusense.com/2018/07/02/anosognosia-and-alzheimers/
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)
https://www.alz.org/help-support/caregiving/stages-behaviors/suspicions-delusions
https://www.alz.org/help-support/caregiving/stages-behaviors/hallucinations
Excellent Resource on Vascular Dementia
http://www.alzheimer.ca/en/About-dementia/Dementias/Vascular-Dementia?gclid=CPrDm4OJzdQCFdaFswodYw0Kxg
A Form of Dementia that Affects Vision: Posterior Cortical Atrophy
https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/posterior-cortical-atrophy
Activities for Mid and Late Stage Dementia
Manipulatives-
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:
http://www.vintagelibrary.com/OldTimeRadio/
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
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147533890
Disinhibition and disturbing behaviors
https://www.fightdementia.org.au/national/support-and-services/carers/behaviour-changes/disinhibited-behaviours
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
http://www.rxlist.com/drug-interaction-checker.htm
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.
http://www.ascp.com/
A list of drugs that should not be crushed
http://www.ismp.org/tools/donotcrush.pdf
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
http://www.slideshare.net/HISCSonoma/teepa-snow-dementia-expert-with-bathing-tips-for-caregivers-of-those-with-alzheimers
http://www.alzheimersweekly.com/2015/04/bathing-dementia.html
Contractures:
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:
http://www.alz.org/care/alzheimers-dementia-screening-providers.asp
Elder
abuse and neglect:
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147519591
When You Need to Take Your LO to the Hospital
https://www.nia.nih.gov/health/going-hospital-tips-dementia-caregivers
Incontinence diaper disposal. No odor:
https://avacaremedical.com/akord-slim-adult-diaper-disposal-system?fee=14&fep=17288&gclid=CL3V1b_RuNQCFc1WDQoddMgD6g
Help with dental care
http://www.alz.org/care/alzheimers-dementia-dental.asp
How to determine if your LO has
pain. Use the Pain Scale:
http://prc.coh.org/PainNOA/Abbey_Tool.pdf
Picking at skin/scabs
http://www.alzcompend.info/?p=233
Intimacy and Sexuality: Resources for Dementia Caregivers
https://www.nia.nih.gov/health/intimacy-and-sexuality-resources-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:
https://www.medicare.gov/nursinghomecompare/search.html?
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.
https://www.medicare.gov/what-medicare-covers/part-a/reporting-problems-in-nursing-home.html
Dealing with the Guilt
From the Alzheimer's Association, US
https://www.alz.org/documents/national/topicsheet_griefmournguilt.pdf
From the Alzheimer's Association UK
http://alzheimersshow.co.uk/editorial/dealing-carers-guilt/
From Australia
https://fightdementia.org.au/support-and-services/families-and-friends/taking-care-of-yourself/your-feelings
OTHER HELPFUL SITES
Urinary infections in people with dementia
http://www.disabled-world.com/health/aging/uti.php
Australian Site: Nutrition Matters – Finger Foods:
http://dietitiancentre.com.au/wp-content/uploads/2011/11/Nutrition-Matters-Aged-Care-September-2010-Final.pdf
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, 2010by Helen Buell Whitworth "MS BSN" and James Whitworth
Hoping this helps.
Stephanie Z
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