Anosognosia in dementia
Hello New to this community and this is a first post - learning to manage the diagnosis of dementia in my 80yo mother which is complicated by what appears to be Anosognosia - which without any experience I had labeled as either being in denial vs an inability to acknowledge due to the condition. Either way it is a significant complication in helping to manage the situation when the person of interest doesn't realize actions are needed to ensure their well-being and actively works against the care-taker
Any advice on managing the situation is appreciated (currently there is a refusal to allow us to manage meds which results in frequent mistakes)
Thank you
Anosognosia in dementia: A review of current assessment instrumentshttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC7527687/
Comments
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Welcome wildbio. Anosognosia is definitely not denial, but is unawareness due to brain pathology. Read about anosognosia from the caregiver perspective. If you try to confront her with reality she will get upset. So don't mention dementia, Alzheimer's or that she needs help. Learn the work-arounds that the members use. Read a lot of threads and keep posting. The members are experienced and knowledgeable and are willing to share.
Iris
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I just joined as well and saw this post. My dad was diagnosed a few months ago after a lot of difficulty getting him to the Dr. in the first place. I don't know if he is unable or unwilling to see his symptoms but he gets very agitated when we say anything about his inability to do something (like travel across the country alone). He went to the Dr. for his 2nd appointment today and would not let anyone but my stepmother go with him and told her she could not talk while there. Does this sound like anosognosia? I was not aware there was a specific condition.
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Is he driving or traveling at all? When he says he is going to travel across country alone, why not say, ‘wow, that sounds like it would be a fantastic trip! what places are you likely to see? ‘ If he would not be able to plan and execute this, why tell him he cant do something? As you see, telling him he cant do something is inviting agitation. Going along with these fantasies is going to be going to be easier on everyone involved. Discussing his ‘condition’ at all should be avoided…it is not productive.
There are many ways to inform the Dr of what exactly his behaviors are. A note to the doctor in advance of appointments can be provided so the Dr gets pertinent info.
I used to go with my mother to appointments + sit slightly behind her + when she was not telling the dr the true facts, I would be subtly shaking my head ‘no’. believe me, the dr knew what was going on.
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Anosognosia is more common than not among those with dementia (I've seen 70% estimated). My partner is a solid stage 6 and in MC for two years, and today asked me if I'd like her to call the gravel company to get new gravel for the driveway, no clue that she hasn't done anything like that in years. I didn't correct her—as mentioned above, there's no point if you know she can't execute it.
The medication piece can be particularly challenging, especially for those still living alone. My partner fought me on it tooth and nail; although I eventually was able to "pull rank" by being in the medical field, there was no easy solution, and I eventually had to lock up all the bottles and just dole them out in a medicine cup morning and night (and mealtimes, too). I think for most it comes down to this, and there is ultimately nothing short of locking them up and direct supervision that will work. Sooner rather than later on this.
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My Dad is in early stages and is still driving and fairly independent. However, he has traveled out of state twice in the past 8 months and got lost and had police contact both times. We have not been able to get an accurate explanation of either time. He had dug his heels in and I think it will only get worse. Unfortunately, it's not a fantasy.He could easily execute his plans.
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Hi to all new members posting here. Sharing two things here, that are intertwined. This is what I learned first hand in the last 6 years of dementia caregiving 24/7.
- Anosognosia is a real thing and it is best to learn the art of "fiblets" and workarounds. Imagine someone gaslighting you about things that do not fit your reality. You/we would be irritated at the very least. But with the dementias there also are challenges with judgment, emotion regulation, moods, perception, executive function/decision-making and more. So, the frustration, fear and anxiety — and fury, that your trying to reason with someone whose reasoner is broken can cause? Totally understandable and should be avoided at all costs. They can't help themselves. We can control our thoughts and approach, though.
- Driving is a huge issue in early stages as is financial mismanagement. I too, thought the biggest issue with driving was his potentially getting lost. That is due to the lack of awareness that dementia is more than just amnesia - memory loss. Turns out that is only 1 of the 7 "A's" of dementia. In addition to all the brain and behavior changes I rattled off above, there are also vision, hearing, and spatial issues, reflex and muscle control concerns and much more. This is because when the brain glitches, it can short out just about any function at any time. You really don't want someone behind the wheel of a heavy metal vehicle moving at high speeds, when this is the reality. It sounds like you have had 2 warning shots with his getting lost with police involvement and no clear explanation of what happened. Those are the "near misses" that you know about. Trust that there have been other signs. See the last article below.
- Reread Iris' and the other members' excellent comments - driving and anosognosia mean at some point you need to take the reins, and the keys. He will not perceive that he's impaired as you can see. And you will not be able to negotiate or convince him. Our PWD LOs who can sit and agree, then keep their word, are few and far between. Its brain disease after all, and not their fault at all but we really need to take it seriously. Quickly. Other peoples' lives are involved. You don't want to get sued for killing someone or their child. Sorry to be so blunt, but that is what is at stake. Families and friends MUST be responsible regarding driving and dementia. I disabled and then disappeared the car - short version of a long story.
Here are some helpful short articles for how to handle things — my best approach was "don't ask, don't tell".
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He should not be driving!
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Excellent information. Just added this post to the new caregivers group
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Thank you all for the information and insight - very helpful. Today is the day of the week that we restock her medicines - we replenish the weekly dispenser but do not leave the bottles with her. If we do leave the bottles she will take her pills out for the day and then immediately refill for that day - sometimes forgetting that she did this and then double dose herself…so even though she is currently obsessed with us managing her meds (and resents us thoroughly - to the point of being verbally and borderline physically hostile)…we will not be turning her meds back over to her.
The car is something we have yet to address but a similar strategy is imminent - no real solution other than eliminating the risk by taking the keys and/or car. There have been multiple instances of her getting lost and there are multiple dings, dents, and scratches so the indicators are all there.
The doctor visit this week was horrendous - we were able to get her there after she fell and we started seeing more hostile/aggressive behaviors (including vilifying my wife and I (her sole caretakers)). We used the fall itself as the justification for getting her to see her doc. Getting her into the car and the ride there was a nightmare. At the appointment she insisted on talking with the doctor alone at first and communicated that she felt as if she had been tricked into taking the cognitive diagnostic tests previously so her answers were meant as "jokes" which is why she scored so low. We do now have a brain MRI scheduled for this week with follow-up by a neurologist. I was able to talk with the doctor and communicate my concerns - the response was that my mother didn't appear to be a threat to herself so there was nothing else that could be done. My mother is refusing to take both her anti-depressant (Sertraline) and the Donepezil
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Thanks for the update. So difficult. Is she living alone? Sounds like she is past that point as well. Hope you have power of attorney, as you will almost certainly need it. If you don't, talk to a certified elder law attorney asap (look at nelf.org for lists by location). A lot of these are adept at getting someone to sign—sometimes works to say it's in the context of everyone in the family updating their papers. if not, guardianship is a more complicated and expensive process. The attorney can help you assess her finances as well, in terms of qualifying her for Medicaid if needed for long-term care.
I wouldn't worry so much about not taking the donepezil but she probably would benefit from the sertraline. If she is not living alone, you may be able to find liquid medication formulations that you could put into coffee, juice, etc.—unfortunately many times it comes to this "surrepticious" administration in order to control behaviors, especially when paranoia is part of the symptom complex. But again you need medical power of attorney in order to legally do that.
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Wildbio…..this part: "she felt as if she had been tricked into taking the cognitive diagnostic
tests previously so her answers were meant as "jokes" which is why she
scored so low."Might I ask how you initially got her to go? Were the tests done just now or previous to the appointment you just referred to? Any info you can provide on all that - as well as the tests themselves - would be most helpful to my brother and I since we've not yet gotten to the point of actually taking my aunt for any sort of evaluation. Was it her GP or a geriatric specialist that you took her to?
Thanks in advance for anything you might be willing to offer. Sorry to hear of all the troubles. What a fantastic resource this is at least.
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@wildbio said:
At the appointment she insisted on talking with the doctor alone at first and communicated that she felt as if she had been tricked into taking the cognitive diagnostic tests previously so her answers were meant as "jokes" which is why she scored so low.
One good strategy for meds is to have the pharmacy prepare them as daily blister packs and tell her it's the new way the pharmacy does it now.
Just an FYI- The use of humor as a deflection ruse in dementia is so common, it is included in DBAT. Stage 3/Middle Stage.
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@three4rd I can't speak to getting a LO to the doctor— dad was all about getting the best possible care for himself.
The tests done in-office to start are more of a screening test that can be done by a PCP or NP as part of a regular visit. My mom's MAP sends an RN to see her yearly who administers MMSE during the yearly patient wellness check. The three most commonly used are MMSE, MoCA and SLUMS which all take about 10 minutes. It's best to contact the doctor ahead of the appointment so 1) s/he can have the materials ready and time allotted to do the tests and 2) so you don't have to bring it up in front of her. It's best to let her think it's a routine check for seniors.
You can google the test names/acronyms to see copies if you're interested.
That said, these tests do have limitations. This is especially true for people with a lot of cognitive reserve. Dad's MoCA did not really corelate to how he functioned IRL.
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Thank you - Yes she is living alone but very near us (literally a two minute drive) and in a condo that is no- to low- maintenance. We are actively exploring other housing arrangements. And yes(!) I have a durable power of attorney going back a couple of years when we facilitated selling her home (which she still resents me for). We did see a benefit from the Sertraline but she won't / can't acknowledge the depression. I'll give her credit for trying to fight this but at the same time wish she would allow us and the medical professionals address her needs.
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the first visit was last summer (she was much less resistant then) and I did talk with the GP ahead of time about our concerns - her getting lost, managing meds, etc. The outcome was mild-dementia with mood disorder. Followed up with a brain scan that showed chronic micro-vascular disease and generalized brain atrophy. In regard the type of test - there is another post here that explains the differing options.
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These medical terms are great for filing for benefits. But in reality, you and the other newcomers are dealing with dementia. You have to understand that anosognosia is real and that your PWD will never agree that she needs your help. You have to forget about tip-toeing around. Read a lot, learn what you are up against, learn some work-arounds, and go forth! Otherwise, you will be waiting for a crisis, and then everything will be harder for you.
Iris
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Geez…this site is big on abbreviations! Hoping all those test designations are available here.
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We want to reason with our loved ones. It seem natural to want to explain in a way that maybe they will understand. It can take some time to understand that it is just not going to work. It makes things worse when family adjusts to this idea in a much different time frame. The person with dementia just doesn’t understand their limitations and needs you to step in and act in their best interest. Unfortunately this realization does not solve everything. Then you will struggle with fiblits, keeping things from them and taking their independence away. These things feel wrong and dishonest and are heartbreaking. If all siblings are not willing to accept theses things are necessary, sibling disputes add even more stress to the situation. Because of the anosognosia the person with dementia feels angry and outraged they are being treated unfairly by the people who probably love them most. My mom will barely speak with me. The bottom line we have to do what is best for them, they can NOT do it for themselves. Unfortunately safe trumps happy. Sorry this is not more positive, it’s been a rough day.
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For some reason many of the tests used to assess things like cognition, behavioral differences, developmental differences and daily function relative to ADLs/IADLs have long names. Hence the use of acronyms. I would have to google where "SLUMS" comes from.
Some tests do have licensing fees for use (meaning they have to be bought) and many have restrictions on who is able to use the test (many require specific training on administration or a specific level of education) which can limit availability of tests.
But these 3, and mini-Cog, are designed to be very assessable to those who might first see a person experiencing memory issues. You can actually find and download copies online.
HB
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Thank you for the candor - we are learning as we go and I respect the need to be direct and proactive to avoid having to be reactive in crisis.
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HB…thanks for all that additional info on the testing!
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I disabled my DH truck. He rarely drove so I disconnected the battery. So far he hasn’t even looked under the hood. You can also drain the gas tank and then make excuses like it has to go into a shop.
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It's so difficult when the Dr tells him he has no restrictions. He is still teetering on the line where not everyone can tell there is a problem, though his family can clearly see it. If I make the cat "disappear" or something like that, believe me he will go buy another one! I told him he could not drive 2 hours away to take my stepmother to a Dr appt and he told me I was no longer allowed in his home.
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This sounds IDENTICAL to my dad☹️
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Car, not cat. Obviously 🙄
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same here - just with my mother
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The definition of anosognosia seems to be "unaware of their neurological deficit or psychiatric condition" (per this) What about unaware of their physical condition, such as responding to "you ought to use a cane" with a "I'm fine and can balance while walking".
I can start a different thread if necessary. I did a quick search and can't find discussions on it. I've seen articles on this topic (example below), but they don't always include the situation for PWD.
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I'm fighting the same battle dancsfo. My partner has fallen multiple times but cannot remember to use a walker. She is clearly, clearly more stable on one. We have tried and tried, and she will use it if i insist when i am with her at MC, but it appears to be a losing battle. The physical therapists just shrug their shoulders, they don't have any solution. It's just a matter of time until she hurts herself badly i think. Would love to hear if anyone else has any ideas on the subject.
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I can ask a physical therapist too, but I think they are not well trained in dementia care. I'm just hoping that repetition and constant reminders may help, and we all know that a fall can lead to so many different problems.
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Regarding fiblets: a way to make fiblets more palatable is to make them about something external to the PWD. Don't make it about what they can't do. For example, don't say, "you're not allowed to drive anymore." Instead, make up something, like "l'm going that way for an errand, would you like to come along?"
The crux of Alzheimer's Disease is that the PWD CANNOT LEARN. Hoping that the PWD will eventually learn to do something new is futile. Repetitions and constant reminders are for the MCI stage.
Iris
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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