Expert: Mary Gordon - 4/27/2011

Question
QUESTION: Dear Mary

My mother 78yrs has dementia, do you answer questions concerning dementia?

She won't go to the doctor.  The new doctor I arranged her to see wants to arrange an endoscopy to rule out a possible serious condition, as she is on warfarin with black stools, constant burping, weight loss 5kgs since Dec 2010.

I have made 2 appointments with her with the new doctor, she turns up at reception but won't go in to see him.  

I have written a letter to her regular doctor whom she has had for 12 years, with her symptoms, but he won't do any investigations.

What are your comments please.

Thank you
Jo

ANSWER: Hi Jo, I take it this is a specialist your mum doesn't want to go see. I think at this point, someone might have to accompany her to the appointment, and hopefully, sit with her during the consultation. Could be a relative or a friend - but someone needs to ensure she goes in, and be a witness to the discussion. People with dementia are very unreliable both in terms of telling the doctor what's going on with them, and in recalling or understanding what they are told.  

The doctor will likely want your mother's permission, perhaps in writing, to allow you or other family member to speak to the doctor directly and be involved. I hope someone in the family has a signed power of attorney from her for both personal care decisions (i.e. medical) and also for financial matters.

If she has blood in her stool, she should not be on warfarin - never mind a scope, have then not looked at her stool for blood? Is she going for regular checks on her warfarin levels? If she is forgetful, it will also be important to monitor her medications to make sure she is actually taking what she is supposed to be taking, and on the specified time table.

If the new doctor is just a replacement for the prior unhelpful one, pull out all the stops to get her in there. Tell her white lies, bribe her with a nice outing, cajole, flatter, distract. Don't tell her in advance about the appointment if she is going to fret, just come scoop her up, and carry her off. Tell her some fibs and use her memory loss. "Oh mum, I did tell you about this, it's something to do with the silly insurance. Lets just pop in and then we can go for a lovely lunch."   We actually swarmed my mother in law a few times (i.e. a couple of family members would come cart her off, and before she knew what was happening, we'd whisked her into the office.  The thing is, her health and safety are at risk, and that trumps every other consideration. She may not be capable of making rational decisions, much less assess her own situation, and thus, you must step in. This is no different than if a child had an terrible injury and set up a huge fuss over going to emergency. You would just do whatever you had to do to get them there, and not feel a second's guilt over it.

If you get her into the new doctor, the cognitive symptoms should be front and center. There are some simple screens that can be done right in an office that are very effective as indicators that something is really wrong. After that, she can be sent to a specialist, such as a neurologist or geriatric psychiatrist with a dementia specialty. Since you didn't mention a specific diagnosis for her cognitive impairment, I take it she has not been properly assessed or diagnosed. A diagnosis IS important, because it gives you some idea of what may be coming next, and what you can do about it (if anything) to help you make good plans.

Just as an aside, here is an example of sample screen a doctor can do in his office.
http://www.bcguidelines.ca/pdf/cognitive_appendix_c.pdf
A score of 24 or more is generally considered normal.
Another common test is to ask the person to draw a clock face. The doctor will draw a circle and ask the person to put the numbers around the dial, and then show the hands in a particular spot. Here are articles about this screen.
http://ageing.oxfordjournals.org/content/27/3/399.full.pdf
http://www.alzheimersreadingroom.com/2009/12/alzheimers-clock-draw-test-detect-s

Our family doctor did some of these with my mother in law, and she couldn't copy simple line drawings or do the clock faces at all, even though if you had met her, you would have not thought there was much wrong. The clock face is a deceptively simple test - it demonstrates deficits in executive function (to be able to draw one, a lot of abilities have to be functioning that a healthy person doesn't even think about).

If I have misunderstood anything in your question, or want to ask more, please feel free. It is very difficult for all of us when the authority figures in our lives suddenly become the vunerable. We all have a struggle with wanting to treat them like autonomous and responsible adults, when our guts are telling us they need the kind of shelter and protection our children do!

Thinking of you.

Mary

---------- FOLLOW-UP ----------

QUESTION: Hi Mary,

Thank you for your reply and all the useful information.  I haven't had any experience with these issues, and there is so much involved and it is getting very complex.

The doctor mum won't go to see is her new nutritional doctor, who is treating her with Vitamin B injections.

I asked her regular doctor for a referral to a specialist, and he refused to acknowledge she has a problem. She appears okay some day, its very subtle.

Can I add another problem.  Mum's best friend she has had for say 12 years, is involved in network marketing selling Amway and Mannatech vitamins.  She isn't well herself mentally [72yr], and Mum feels obliged to continue buying the vitamins.  I have looked into the vitamin contents, and told Mum they are not really doing her any good as there are only small amounts of vitamins in the tablets, and she is being taken for a ride, and she would be better off taking liquid vitamins that are more specific for her health concerns.  She says she knows its a scam but then says she will continue to take them, because how people have recovered on the supplements.  This is very expensive for her and a waste of money.

Thanks for the suggestion re the doctor, I will have another go next time she goes to see him, but she is so uncoperative its difficult to encourage to see the doctor.

I have given her the documents concerning the health directive and power of attorney, she just puts it aside, and says she will deal with it tomorrow, which never comes.  The other day she heard people talking on the radio about updating a will etc, and she said she would go an see about it, this still hasn't happened.  So I can see her follow through action is affected.  

The docotor said the bleeding could be coming from the upper intestine.  Her stools are back to normal colour.

She forgets her medication, but I usually don't find out until the warfarin service centre ring up and I over hear her telling them she had forgotten.

I wrote to her regular doctor and asked for her to be referred to a specialist, but he refused.  The CT scan did not show any abnormalities.  He saw her after she had the stroke and when she was still in the state of anxiety and frustration, which lasted a bit over a week, and he couldn't tell there was something wrong with her.

Thanks for the link to the assessments, I will give it a try.

Its funny, sometimes she'll ask me a question, I will tell her the answer but its like she is not listening to me, and doesn't do anything I suggest.  

Unfortunately all the family members are in denial there is something seriously wrong with her, and when ever I bring it up, they come down hard on me, because her regular doctor said there's nothing wrong.  So I have given up, I've tried my best, so when she does eventually gets diagnosed, I hope they don't blame me for not looking out for her.

She's getting worse, tired a lot more and feeling sick a lot more, and mentally decline more, even though it is a subtle change.  She talks to the family about not feeling well, but they don't appear to be aware of the importance of getting her to the right doctor.  They just brush it off, and are more interested about talking about their problems.  I feel so helpless and lonely.  She went to church last Sunday, saying she knows she will die soon and is looking at how to arrange her funeral.  Because two of her close friends were killed in a plane crash recently, and she said it brought it home to her when one's time is up.

She is planning to go to visit one of her sons, a 2 hr flight away, then after the planning, she said she doesn't know if she can actually physically do the trip.  He's the only one that will listen to me about her health, so if he notices the changes that would be good.  I am worried she might get lost after getting off the plane, or have a relapse and get lost.  She had a stoke last Dec and things aren't the same with her cognition.

Another thing she is not rememberig to eat and not eating enough.  I have offered more food but she declines it.  I am under the supervision of a very good naturopath, and I have learnt what supplements to take and what to eat and in what amounts and I can only make an assumption she is nutrientialy deficient, because she isn't taking the supplements or eating enought food.  And she still drinks alcohol, and forgets how much she has had.

Its sad to see.  We will just have to wait it out, and take the opportunities as they come.   A few of her friends are in aged care facilites, she isn't that bad yet, but I have noticed since the stroke in Dec last, she has declined quite a lot over the months, that is probably unrecognisable to others.

Thanks for your input.
Jo

Answer
Hi Jo, I take it if she is getting B12 shots that your mother may have been diagnosed with what they used to call Pernicious Anemia or Addison's Anemia.

People who have this can't absorb enough vitamit B12 from food. This is because they lack intrinsic factor, a protein made in the stomach. If you are missing intrinsic factor, you can eat tons of B12 rich foods and take oral vitamins, and neither will help at all - there may be plenty of B12 in your stomach, but you can't absorb or use it. Usually this is caused by an autoimmune process, where a person's immune system has destroyed the special gastric mucosal cells that produce intrinsic factor.

Other conditions can cause B12 deficiency including infections, surgery, medicines and diet.

Lack of B12 causes red blood cells to be very large and don't divide or leave the bone marrow normally, meaning that you don't have enough blood cells to carry oxygen to your body. Long lasting or severe pernicious anemia can damage the heart, brain and other organs. It leads to erve damage, neurological problems such as memory loss, and digestive tract problems. It can also up your risk for osteoporosis.  

The usual treatment is B12 injections.

So, if she IS B12 deficient, this alone can cause the mental problems you suspect you are seeing. Here is an article.
http://www.suite101.com/content/vitamin-b12-deficiency-may-cause-confusion-or-de

Early recognizable signs of vitamin B12 deficiencies may include:

Sleepiness and fatigue
Dizziness, light-headedness
Body odor
Diarrhea
Shortness of breath
Pale or yellowish skin color
Fast, rapid heart beat - palpitations
Nausea - poor appetite and weight loss
Diminished reflex responses
As the B12 deficiency worsens, you may also notice the following symptoms:

Pain, tingling, or numbness in the arms, legs, or other parts of the body
Impaired sense of touch - may not feel pain or temperature changes
Difficulty walking or talking
Vision changes or damage to the optic nerve
Memory loss - dementia
Personality changes - depression, hallucinations, violent behavior
Heart attack - heart failure
increased risk for dysplasias and cancers

If she is in need of B12 shots, it is really important she get them, as you can see this is a serious thing, and can lead to many of the symptoms you are suggesting she has.

Mary