How to Manage Early Dementia – What works/what doesn’t?

What worked for us was getting mom seen by a geriatric psychiatrist for medication management.

This can be a trial and error process, so don't be surprised if it takes a while to get it right.

Accepting blame? Have you watched any Teepa Snow videos on managing dementia symptoms? I would not accept blame for stealing something; I would perhaps say "Oh, I must have moved it; let me look for it".

Understand that UTIs can be the cause of a sudden escalation of behaviors. Aggression towards caregivers is not acceptable. If this happens, call EMS and get her to the ER right away. UTIs can turn into Sepsis with frightening speed in an elder.

Admission to a specialized Geriatric Psych facility can be priceless for getting the right meds.

If you haven't already got one, get a finger-tip pulse oximeter. There are lots of caveats because these cheap'n'cheerful devices are not even intended to be 100% reliable (readings can be affected by skin pigmentation, circulation, cold/heat, slipping etc etc etc) but if your mother is prone to sudden fluctuations in mood and behaviour you could do worse than check her blood oxygen level. Is she pretty good at managing it, normally?

How about pain relief? Well controlled?

I read what you say about limited mobility; but how did she get on with the PTs during recovery from her fracture? Might be worth continuing if it encourages her, and can be extended to breathing techniques for example.

It is frankly the combination of the COPD here that worries me because what you are describing to us so well is quite honestly where COPD ALONE takes a person. First of all they are enormously frightened and depressed, and the constant, constant feeling of breathlessness makes them very anxious, very hair-trigger-emotive. Add to this the fact that their O2 saturation to the brain is quite dreadful, at times more than less, and even WITHOUT beginning stages of dementia there is confusion. To tell you the honest truth we could very seldom differentiate, as nurses, when a patient was in act-out mode or crisis-mode or when they were really having any dementia.
I would speak with the professional. I would get all the help I can and there are often therapists now who will just work on breathing exercises they can teach you and your elder. Take this up with the doc. Medications to do any calming will be frowned upon, as they cut down the drive for breathing and cause further loss of oxygen.
I am so sorry and wish you the best. Talk with the doc.
And remember, in any neuro-psyc work it is crucial that the examining doctor be aware of O2 saturation, and of the diagnosis of COPD.

Thank you for your kind and compassionate replies. Mom's been on O2 for years, with an inhaler and regular visits to her pulmonologist to manage it. I agree that we are walking such a fine line with balancing the O2 and meds. We'll look into UTI, though her Dr. has always said that the elderly very commonly have them as she tests for them. I agree it's scary how quickly they can escalate. I love the idea of breathing exercises, the finger pulse ox and will check out Teepa Snow!

The saving grace here is that we have a strong sibling bond, and we each share in her care (as for that of dad, too), to help lighten the load. I feel for anyone who must travel this long road of caring alone.

Thank you again.

My mom was on oxygen, had dementia, and pain from compression fractures. We had hospice to help for almost 2 years. Very small scheduled doses of xanax and very small scheduled doses of morphine helped her greatly. Morphine helps breathing.

I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it. Medication isn't always the answer for 'behaviors', either; it's more about how YOU respond to HER that makes all the difference, since you live with mom and are her primary caregiver. She reacts to your emotions and that's why it's so crucial for YOU to behave a certain way in order to get HER to react in a positive fashion. Good stuff here:

The Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.” For people to understand that reality and context as perceived and experienced by a person with dementia, is altered by the dementia; and, that their reality and context is continuously changing as the dementia progresses, requires learning and an attitude shift; it is not ‘common sense.’

Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.


I hope this info helps you as much as it did me. Very eye-opening info.

Regarding the Sundowning, I recommend installing daylight spectrum lightbulbs in the rooms she is usually in and turning them on before the daylight starts to fade, especially if she has to go down a poorly lit hallway to a bathroom, etc. and keeping them on until she goes to bed (or earlier if you think it she'll be fine).

Also, start her on an activity or distraction around the time she usually Sundowns. We have my aunt fold a large stack of kitchen towels, or cut veggies for dinner, or sort color poker chips... it doesn't need to be an "actual" task but we always ask my Aunt if she could "please help us fold some towels" and she almost always does it. You can also have her sort and pair colorful socks, take her for a drive, put on her favorite music or dvd, give her an animal magazine with lots of fun pictures for her to look at, etc. Her cooperation and preferences won't be the same from day to day, so have tempered expectations and just trying different things to see what works.

Lots of good suggestions here!

You might want to find a support group and/or caregiver training programs. With Covid in-person stuff is hard. You can try this online program - it is based on the Savvy Caregiver in-person training. There is a flyer online - https://bit.ly/TeleSavvy_Flyer
If you prefer in-person, check with the Alzheimer's Association, as they do a lot of in-person support groups, and check your local churches, adult day centers, and assisted/independent living centers. They sometimes host in-person support groups.

Dad was diagnosed with Lewy Body Dementia and I become his full-time live-in caregiver for 4 ½ years. Here’s what I learned:
·        Get a good Neurologist, one who treats Dementia and Alzheimer’s patients.
·        Everyone’s journey is unique. The stages of dementia will progress rapidly for some, and more slowly for others.
·        Learn to Redirect – Not Correct:  Learn techniques to shift a mom’s attention away from the situation that is causing anger, anxiety, fear or dangerous or unsafe behavior to a more pleasant emotion or situation.
·        Keep a Regular Routine: Dementia patients function best if they have a daily routine for waking, bathing, meal times, and sleeping.
·        Home is a Safe Haven: It becomes more difficult for dementia patients to leave their homes for appointments, etc. It helped Dad to make shorter trips rather than scheduling too many appointments on any given day. He also felt safer riding in the back seat rather than the front passenger seat.
·        Keep a Watchful Eye: I set up a baby cam in several rooms to allow my Dad his independence but I could respond when he needed help. He was none the wiser.
·        Food Preferences: Taste often changes so take a cue from Mom. Foods she once loved may be something she no longer wants to eat.
·        Time of Day: Get a digital dementia clock that not only tells the time but the time of day (morning, mid-day, sunset, night) to keep the patient more oriented as the day progresses.
·        Communicate: Use a dry-erase message board to communicate. They can read it when you’re not there and know what’s going on. I updated Dad’s schedule before I tucked him in at night. We also talked about what he’d be doing the next day. It helped reduce his anxiety. The message board featured: (1) Day/Date, (2) Location “You live at home with your wife, Sue, and daughter, Jean”, and (3) Appointments – this info changes daily.
·        In-home Signage: When they begin to look ‘lost’ in their own home, it helps to post signs outside each room to help them navigate and remain a bit independent. I also had to label the hot and cold water faucets.
·        Sundowners is Real (and sometimes scary): Like clockwork, when the sun started to set, Dad became more disoriented, agitated or confused. I turned on interior lights BEFORE sunset. I also engaged him in conversation or an activity during this transition time. It helped.
·        Behavior Issues/Medications: Quality of life care includes treating hallucinations agitation or psychosis. Keep notes to review with Mom’s neurologist. There are medications that can help to ease her suffering. My father benefitted greatly from Nuplazid. He was prescribed low-dose Xanax for emergency upsets. Dissolve pills in sparkling cider or grape juice if necessary. Pharmaceutical companies do have programs to assist with the high cost of medications.  
·        Activities: Here’s a good list to review https://www.aplaceformom.com/caregiver-resources/articles/dementia-activities
·        Personal Care & Bath Time: It’s embarrassing to accept help with personal care. I purchased a “dignity wrap” which kept dad covered while I helped to bathe him. He loved it. https://www.dignity-bath.com/
·        Prep for Hospital/Rehab Visits: When a dementia patient is hospitalized for any reason, they tend to panic in new surroundings. I made a Hospital/Rehab Care kit that contained: Inexpensive framed Family Photos with name labels (grandson Tim), a Life Events Poster (the date he married, where he worked, what he did, how many kids/grandkids, etc.), and an unbreakable jar of his favorite snacks. I used Command strips to hang items on the walls to meet facility requirements. It also gave staff topics for conversation with Dad. 
·        Engage Hospice Services – Hospice is not limited to the final days of life. For 1 1/2 years, my Dad benefitted from daily visits for bathing/dressing, weekly nurse visits, and visits from a social worker.

Don’t laugh- Google “Harmonica for COPD”.

A little music is ALWAYS a good thing!

We enlisted the help of a doctor that specialized in geriatrics and he was able to prescribe a low dose of antipsychotic medication which really helped take the edge of the agitation and paranoia. He also prescribed anti anxiety medication, which she needed and made a huge difference. My mother still has episodes but they are much shorter and far less frequent with these medications.

Aside from that, keeping her busy with helpful tasks (folding laundry, meal prep, etc.) and also easy activities like puzzles or simple card game - anything that doesn't require a lot of working memory. Magazines as opposed to books.

I feel for you - it's hard not to take these things personally, and it's hard to see a loved one acting this way. Be sure to be kind to yourself, especially since she isn't always able to be.

Establish very strong boundaries with her and do not allow them to be broken for any reason. Asking her doctor to prescribe medications that can help to maintain level behavior is a good idea.
You don't have to correct her on everything. A delusion is okay if no harm comes of it and it makes her happy. Do not smile and accept blame for something that isn't your fault though. Correct her behavior. Do not tolerate any level of abuse from her verbal or physical.
When she acts up, tell her that she will not speak so to you then completely ignore her if it is safe to do so. Pay her no attention whatsoever and have other family members in the house do the same.
This may sound harsh, but really it isn't. I've worked in elder homecare for almost 25 years. I've had many clients in the early stages of dementia and even without who behave exactly like children. A child will see how far they can push adults in their life to gage how much they can get away with before they get any consequences for their behavior. They learn how much of a tantrum has to be had in order to get their own way. Children need boundaries. Elderly people need them too. Even with dementia. All people need boundaries. Caregivers have to make boundaries with the people they're caring for if they want to be successful at caregiving and if they want to maintain any level of sanity.
I always established my boundaries early on with clients. It helps. It will make the caregiving situation more tolerable and easier.
Establish boundaries with your mother and stick to them.

My mom needed a schedule to remain calm and not anxious. She did not so well with unexpected events. Even showers needed scheduling. We established a routine with her input. Eventually we found a great assisted living facility. Yes it is pricy. She admits she feels safer. She was afraid to be alone. She stopped having night time hallucinations after getting into a facility. We keep a routine for visits and use a note pad to write down when we will visit and if we will go in the car. She is happy and content. My mom is 88 yr old. Good Luck..a long road ahead..PS: Lewy Body Dementia does not allow “behavior meds”..it can make it worse! Be sure what you are dealing with.

I was agreeing with everything you wrote except the “smiling and accepting blame” part. Repressed emotions cause resentment. I recommend that you take care of yourself and your emotions by not taking blame or feeling guilty for a situation that is out of your control. Don’t worry about saving everyone’s sanity, just save your own. Take breaks, do something kind for yourself, get help, delegate tasks.

my moms dementia was a surprise because she declined swiftly in a 2 week period and was hospitalized due to behaviors of aggression. The doctor prescribed zyprexa and that is our miracle pill. It is second generation antipsychotic and she is no longer in terror and anxiousness. In the beginning, because she was aware that she was forgetting and that bothered her, I would make her a concierge schedule and give it to her nightly. She referred to this all the time. I gave it to her so she would know what was going on the following day and her daily routine. We knew the antipsychotic was a good thing because when we tried to wean her off (with her doctor help), she digressed and it was awful! When mom, who has awareness moments and then not so aware moments, becomes sad or confused, I tell her “it is okay, Mom, remember that you are safe and we love you and most important God loves you.” I also write that on her daily concierge schedule. Mom looked at a AL after we lived with her for 8 months and decided to try it for 3 months while we did family events with the other side of the family. She loved it so much that she took a tour of the other apartments and decided she had the best one! As she has declined cognitively, but is too aware for MC, I got her personal care assistant to be with her from 2-6 (the minimum hours for this service where we live). It has been a home run. Mom is getting showers, lotions applied, her hair fixed, walks and timely attendance to event in house and she has a escort to go to the dining hall and back. She is more forgetful in the evening and this was the best time for assistance. I also have her breakfast and lunch delivered if she doesn’t go to the dining hall. Mom and I talk daily and I am grateful that she is happy with her privacy and she and I are not interacting all the time as when we lived with her. She feels more like an adult by having her own apartment in AL with assistance. I am her daughter now and her advocate. I found a doctor who sees her once a month and I schedule and take her to dental and eye appointments. I/we are so grateful that mom is in AL and it has been good for her. She has more social interactions, she has a variety of food (and I have them cut it up before they give it to her) and she can control her own heat. Prayfully moving forward, we ask for God’s best plan and for his protections for my mom.

I have found with my husband in early to moderate stage of Dementia that having a nap after lunch for an hour or so makes a huge difference in dealing with late afternoon and early evening sundowning. Also, keeping him on a regular schedule and not throwing him into unfamilar situations is "huge"!! As you all know some days are better than others but overall we are doing ok and the situation is manageable. Only meds he is on are for his high blood pressure. His Doctor states many of the meds for Dementia do not work and make things worse. I concur as they never helped my mom and made her crazy. One thing he does that fascinates me is keeping a diary. Everyday he writes in it and his writing is excellent and very understandable. Writing is a brain exercise so I certainly keep him in notebooks and pencils. Do all you can to encourage activities that stimulate the brain. He also likes tv and reads the paper and lots of magazines. The increasing rents and prices of food, etc. is more of a worry than he is, as we are on a very fixed income. It is getting scary and nobody cares as long as they are getting their piece of the cash! Good luck and hope this helps!!

Be sure that all of her paperwork is in order while she is still able to sign legal papers (if it is not too late). She needs to set up Power of Attorneys for medical and financial decisions. She also needs a living will with her advance directives for medical care and a will if she has assets. Her POA needs to be on file with Social Security and Medicare to be able to talk on her behalf. You can do this with a phone call with her sitting next to you to agree to it. If she doesn't have these things, you may want to apply for guardianship. I'm assuming that she's living with you in your home. Notes around the house are useless. People with dementia lose their abilty to read, understand and follow instructions, even if they were smart and great readers in the past. Her lack of mobility is a mixed blessing. It may mean that you don't have to worry about her wandering. Dementia manifests differently in each person. When my mother moved to a memory care facility, they removed all sharp objects (knives, scissors, etc.). They had a tracker bracelet or anklet for her that set off an alarm when she approached the door (she was a wanderer). They don't have any stoves in her room. (She had done some wacky things with the microwave when she was in independent living). Speak to her doctor about her anxiety and changes of mood. There may be medications, but finding the right one(s) with no bad side effects can be by trial and error. My mother's doctor prescribed melatonin, which is natural and mild to help my mother sleep. Melatonin has to be taken every day and it is also mildly calming. Hallucinations and anxiety are part of dementia. I've seen my mother reach out for something, as if there were something in front of her (there wasn't ). I saw other people in her memory care unit do the same thing. My mother fell out of her chair once doing this and bumped her head. After that, the aides put her in a geri chair, which is a reclining chair, which limits her movements. Medicare or hospice paid for this. A friend told me that her mother with dementia talked to the TV as if it were a person, and also talked to dolls. Stuffed animals or dolls may provide some comfort when she is in a later stage of dementia. People with dementia have good and bad days. Sometimes when I would visit my mother in her memory care facility she'd tell me to go away. When that happened, an aide told me to go in another room for about 10 minutes and then come back. It worked! Redirection also works. If she is doing something that is not good for her, try to distract her and get her to do something else. Your approach to be non-confrontational is best. Walk away if she is hitting, kicking or biting. My mother bit the nurses in a hospital. I realized that since she is non-verbal (she lost her ability to talk) this was her way of saying "don't bother me." You'll have to learn alot about about dementia to understand what is happening to your mother's mind and how best to deal with it. With my mother, who has advanced dementia, it helped me to think of her as aging backward into a second childhood and then to infancy. She is now like an infant, she cannot walk, she cannot speak, she needs to be fed. Be prepared for your mother to decline further. There are things that you can get to help her (hospital bed that rises up and with bars, geri chair, wheel chair, etc.) and Medicare or hospice will pay for it. She may get to a point where she cannot do anything for herself, including walking, going to the bathroom, etc. If you and your family cannot handle this, you should have a plan B to place her in a memory care facility where there will be a team of professionals caring for her. All the best to all of you.

So may great ideas here!! I would like to add be cautious with adding medications tho. They react differently in different people because of the way they metabolize meds.

Aricept made my parent worse causing agitation and feeling insecure with outbursts. Once it was discontinued and approximately 3 weeks later ( as the half life was so long) they were back to themselves.

Using only holistic and OTC supplements has helped my mother. Mira Lax is a no-no. My mom's doc recommended Mira Lax for occasional constipation and when I was desperate to figure out how to deal with the dementia fits that would go on for 2-3 hours at a time, I started doing mucho research. Mira Lax is polypropylene glycol and it's horrible for everyone, especially dementia patients. When I took her off of the Mira Lax and started using good old Milk of Magnesia, or even a magnesium supplement when needed. It didn't fix or heal her dementia but it did stop the sundowning fits. I also give her Cranberry Fruit Extract (capsules) for her bladder health, Lion's Mane Mushroom liquid drops (in her tea) for mental clarity, Melatonin for sleep, Vitamins D, C, Zinc and Elderberry gummies, Dandelion Root Tea (instead of coffee) for bladder health. She is relatively healthy and doesn't take any other meds, so she really has no side effects from prescription medications to deal with. Peace.

Lack of oxygen in her brain and recent stress are making her mental condition worse. I doubt that there is anything that could help her at this time. Except to wait and expect that the oxygenation of her brain will improve. Medications could aggravate her COPD. Tranquilizers are respiratory depressants and can kill a person with COPD. Memory enhancing medications are of little value and also have extensive side effects. From a description of her behavior, it seems that she also has delirium symptoms (visual hallucinations). It's hard to assess the level of her dementia at this time. Adding medications will make her delirium worse. My suggestion is to watch and wait.

First of all. Hang on. The ride is going to remind you of a rollercoaster. Chaotic and crazy at times.
My best advice is the following...
1. Get POA LEGAL stuff started now.
2. Get the book called the 36 Hour day. It will help you understand so much more.
3. Ask the physician/ primary care provider if taking them off as many meds as possible would help. Once we discontinued Lipitor, and other meds thinking became clearer. Prilosec also is linked to dementia like symptoms. Talk to the PCP about palliative care. This is a fantastic way to decrease the amount of medical interventions that serves only to prolong a miserable end of life time. All the specialists in the world will not reverse what is happening and add exponential healthcare costs to you and your LO.
4. As elders age the liver and kidneys do not metabolize drugs as well, so for example narcotics may complicate things if not managed very closely. My 89yo mother had to withdraw from narcotics after her hip surgery (they had her in so much!) Which also made her a falls risk...
5. Your LO o2 levels due to the end stage COPD may also be impacting behavior. When there is not good oxygen perfusion to the brain, you will notice all kinds new things.
God bless you in this journey. It is a hard road for all of us to walk .

It took a lot of trial and error before I found the right medications for my mother's anxiety and sundowning. Traditional meds like Xanax had no effect on her! She now takes 100mg Zoloft daily and 50mg Trazadone up to 3 times a day depending on how she feels. I've heard that Seroquel works well and may be similar to Trazadone. It's really hard at first because you have to start them off slow and the waiting can be excruciating for you the caregiver. Best of luck!

God bless your mom. If she has late stage COPD that sounds hard. I was afraid of antipsychotics and tranquilizers when I had my mother and grandmother under my care. Read about them. You will see their side effects. Scary. They make work for a while, but then they may start to have an effect on their blood pressure and swallowing that even confuses doctors. This happened to my mom then they could not control it. Keep her away from coffee and things that you can have control of such as stressful situations. Keep people around her and bring her to the country side. It will have a soothing effect. Speak to her calmly. Keep her away from pain. I would be afraid of giving her these other medications. I am still shaken up. See what your doctors can tell you. God bless you both.

CaringQuandry: You should keep a routine for your mother with dementia. Also, you may want to read the book, 'The 36 Hour Day.'

Keep her surroundings the same and her schedule the same. Get a battery,-operated pulse oximeter so you can check her oxygenation when she is really out of it. If her "sat's" are less than 90%, then call her doctor.

78 YO mom is now diagnosed with early-onset dementia. She is back home after a month in rehab recovering from a fractured pelvis. The fracture has healed, but she also has late-stage COPD and is on oxygen 24/7

Having late stage COPD she will be more sensitive to to changes in humidity so will be helpful to keep it within human comfort zone 50-60% ideal, temperature as you probably know also important, I also suspect falls are more common outside that range.

CaringQuandry,

If mom is still sharp enough to know when she's being re-directed then in those times just be honest with her.
Tell her firmly and with authority that you've already addressed her needs, answered her questions, and discussed the matter with her enough and will not be discussing it further. Then ignore all attempts she makes to bring it up again. Also instruct your family to do the same.
Do not accept blame for something you're not responsible for. Dementia or not never allow yourself to become the elder's scapegoat that they can blame everything on. That boundary can never be broken for any reason.
I can't tell you how many elderly clients I've worked for who accused me of stealing. My answer was always that I didn't know what happened to their money, possession, etc... but I did not take it and would be happy to help them find it.
If something is not found and the client would continue on about it all they'd get from me is that I don't know what happened to their property or money. Then I ignore the matter completely and never discuss it again. Never accept blame for something you didn't do.

CerefolinNac. Not a miracle drug, but a prescription supplement that has been shown to improve brain health with secondary improvements in cognitive function. First eliminate all medical causes for her dementia (there are a lot of them) so that you don't miss something else that needs to be addressed for mental and general health. If her overall health is good the CerefolinNac can turn back the clock a little and improve awareness, alertness and general function. It takes a few months to be sure there is some improvement. The risks of side effects are very low, but the patient cannot take additional B12 with this.

Personally speaking, you CANNOT CONTROL DEMENTIA OR STOP IT. So, you either accept it and live with it (and that can be hell and may destroy you), or you place them where they are safe and looked after. Think long and hard and make sure you do the right choice.

Southiebella has an excellent answer to the issues you are facing, Caring Quandary....
I, too, firmly believe that the holistic approach to all living/dying issues is best.
God knows what He is doing, and man does not.
Check out Dr Eric Berg on YouTube. He's a health expert, and has helped probably millions of people by now by giving out the truth about food, meds, sicknesses, vax issues, and I've experienced healing in my one health problem I had by following his advice!
Please watch, learn and truly help your LO get better naturally! Dr Eric Berg on YouTube.