“Black Box Warning” against anti psychotic drugs in dementia care

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Excellent Blog from Katie Swaffer:

Kate Swaffer (she/her) Kaurna Country's avatar

Screen Shot 2015-08-15 at 11.22.59 amThis quote by Danny Miller is one of my favourites, and is also used in the header of a blog I follow, The PPJ Gazette. This article although nor specifically discussing the dangers of the use of anti psychotics in dementia care, warns very clearly of the dangers of prescribing them, and is worth a read.

Warnings for Patients Taking Psych Drugs (also for their families and prescribing practitioners)

The blog is by Dr. Gary G. Kohls, who is a family practitioner, who specializes in holistic and preventive mental health care. He has expertise in the areas of traumatic stress disorders, brain nutrition, non-pharmaceutical approaches to mental ill health, neurotransmitter disorders, neurotoxicity from food additives (and other environmental toxins) and the problems with psychotropic drugs.

Dr Kohls begins the article with this:

“Over the years, I have formally taught my patients (as well as many participants in my lectures and seminars) about…

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Dementia: ‘Love Lies’

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‘Love lies’ are one of the suggested approaches to dealing with dementia.  The strategy, I believe, is based on being economical with the truth to avoid distress.  On most occasions I have found this approach helpful and have got away with the odd ‘porkie’ or two.  It is possible that it would have been less stressful for my wife if I had dodged her question last night.  Unfortunately, I responded to her enquiries about the weekend by reminding her that family members would be visiting in the next couple of days.  This led to all sorts of anxieties and confusion about what lay ahead.

As the evening progressed M continued to probe about the arrangements for today.  She struggled to grasp who is coming and our plans for the visit.  This is nothing new in this as she is far from an ‘entertainer’ and has always almost panicked when visitors are pending.  Questions about when they would be likely to arrive and if they were staying overnight continued alongside where we might eat.  In addition she just couldn’t grasp which of my sisters, and how many of their family, would be visiting.

M woke up with a start this morning worrying if: ‘any of her kids knew where she lived?’.  She suggested that their lack of contact, in any form, might be due to them not knowing where she was.  As she was attempting to come round she had forgotten that her son had phoned last night with plans to visit on Monday.  She spoke to me in the third person unclear of my status.  I think I made appropriate noises rather than add to her confusion and  helped her get back to sleep.

I wouldn’t put money on where she will be this morning as she tries to make sense of her world.  I suppose all i can do is bring her a cup of tea in bed as soon as she needs one.  At least she will see a helpful ‘Tea Boy’ in the morning and it really doesn’t matter who he is.  You can’t be more straightforward than that!

Dementia: ‘Will She Take Statins?’

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When The G P phoned a couple of days ago he asked me if I thought my wife would take statins?  He is aware of the side effects she has had from lots of medication and that she would be circumspect about another tablet.  When we called in for an appointment later in the afternoon, he did his best to outline the risk factors and tried to cajole M to take just one more tablet.  It was hard work as M followed the household Party Line of general resistance to take medication.  I have to admit at the time I thought M was being stubborn but I am now coming to the conclusion that her instinct is spot on.

I caught up on statins a little yesterday, by calling in advice from one of my reference groups.  Even with an elevated reading of 6.1 my friendly chemist shook her head and said something to the effect of; ‘so what she doesn’t need statins’.  She asserts that there is no evidence base for their efficacy and the risk levels have no basis.  I opened up a Thread on Talking Point and sought information from those who were travelling a similar journey.  My limited search on the Internet turned up a BMJ article that raises issues about the widespread use of statins.  So it appears that my wife’s instinct is well founded.  This is the second time that further medication has been suggested, that has been wisely questioned, and eventually rejected.

My wife has faced a similar battle over mood.  It could be argued that once again she followed the Party Line of her Old Man.  My judgement has been based on a lot more research than has been undertaken with statins.  Witnessing my experience with depression and an understanding that there is little validity in the ‘chemical imbalance theory’ that has been sold by the drug companies, would have led her to question the need for antidepressants.  She maybe  hasn’t read as many of his publications as me but I am sure she has seen enough of Irving Kirsch on YouTube to grasp the nettle here.

My answer to the G P’s question  is: ‘I don’t think so’.  Just like antidepressants she know that she doesn’t really need them.  If I felt inspired I would try to emulate Irving here and come up with something akin to: ‘The Emperor’s New Drug’, as he has for the antidepressant issue.  Perhaps, later in the day I will come up with something and edit this post.  In the mean time I am pretty sure those statins will remain in the packet and I think that is the best place for them.

Dementia: Have We Been Having Too Much Sleep?

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I am just wondering if we have been dozing too much over the last few weeks.  For the last couple of days we have not had our usual morning and afternoon naps.  We have managed to keep going and both feel pleased with our accomplishments.

Yesterday, we had little choice as the phone rang as we were about to have a nap.  Today we have chosen to have short shopping expedition in the afternoon rather than have a kip.  I think we both feel better that we have got things done; rather than watch our ‘To Do List’ expand.  Our expeditions on both afternoons have led to further mental stimulation for us both and that has to be a bonus.  We also have a few extra quid in our pockets following returning some unwanted items; including a mobile phone that some silly man bought for his wife a couple of months ago.   Why on earth I bought a further mobile for someone who was reluctant to use the three she already had still leaves me rolling with laughter. Although it was simpler that the others; it was still a phone and M does not like making or receiving calls.

I am  hoping that our new timetable has another advantage.  It is possible that your truly will stay in bed after the morning chorus and help his wife to remember where she is when she wakes in the morning.  Now that would be something to really write home about.

Dementia: The Importance of Cunning Plans

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I am slowly learning that you have to plan in a cunning way when dementia is around.  Things need to happen on the hoof almost stumble into place.  Last night when I picked my wife up following her wander things went really well.

After I cajoled M into the car I suggested visiting a relative.  M’s Aunty is not much older than her and you could take them for sisters.  A lovely woman who ‘can’t half yarn’, as they say round here.  So a visit usually brings you up to date with the latest trials and tribulations in her life.  It would be unfair not to mention that she has looked after her husband for 15 years until the last few weeks until it became too much.  His Alzheimer’s disease had reached the stage where a Nursing Home was the safest option for all concerned.  So there had been some reluctance to visit, from both of us, as we faced the prospect of leaving with our ears burning once again.

We stayed and chatted for a while to learn of the latest traumas.  C is having a hard time at the moment and some of her tales are haunting as she tries to adjust to her new life.  As we were leaving I suggested going out for a snack together and we all decided to go for it.

I made for a local pub which we had not visited for some time.  We had a lovely time: once the girls got going I couldn’t get a word in edge ways.  They share so many happy memories it is a pleasure to hear them chat over the good old days.  The food was incidental and nothing to write home about.  There are lessons to learn from the lovely evening that we had together.

Sometimes, I almost forget that my wife has dementia and the constant burden that represents to her.  I forget that any planned situation can bring up anxieties about all sorts of things.  It now seems worth springing things on her as if they just dropped out of the sky, rather than talking about what we might do in the future.  It is possible that this is the way to visit family close by.  We might just be out in the car one day and suddenly arrive in Nottingham on the doorstep of her brother and sister.  Time will tell if this Cunning Plan might just do the trick.

Talking about dementia

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Another excellent Blog from Kate Swaffer:

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Screen Shot 2015-08-13 at 8.32.35 amJust for something different, I am interstate doing a few things related to dementia. This view from my motel room in Gosford today is glorious, although for most of the rest of today I’ll be hanging out in the local RSL club. As a guest in the motel of this club, I was even offered a free one year membership to the Gosford RSL Club, so, for the first, and quite possibly the last, I am an official member of an RSL Club! Who would have thought…

And no, today I will NOT be playing Bingo, or at the pokies!!! Instead, I’ll be attending and presenting at a local event about dementia. On Tuesday, I ran a focus group with a group of people with younger onset dementia and their partners and supporter people. I had been asked by an aged care provider, who is setting up services, including residential care, for people…

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Dementia: A Happy Wanderer

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There are occasions when my wife goes off for a walk and I am not sure where she has gone.  My initial reaction when this first happened was panic.  I became anxious when she had been gone for some time and followed advice to call the police. Their arrival coincided with hers and caused great amusement.  A few weeks later when she had been missing for quite some time they managed to find her a few streets away on her way back home.

My anxieties about her being out on her own stem from two sources.  Dementia means that she appears to wander, rather than walk, and has no particular route in mind.  She finds her way back home by asking people to direct her to our particular Drive.  Secondly, with 50% loss of peripheral vision mistakes are possible and accidents could happen.  Yet walking is one of the things her G P has advised her to do, as part of stroke recovery, and she retains and enthusiasm to take his advice.

Although we frequently go out walking together M likes to go off on her own and sometimes tells me she is going for a stroll.  On other occasions I find her missing and  realise she has taken herself off for a stroll.  Additional safety measures we tried with CareLink proved more trouble than they were worth and M refused to use a tracking device.  So I decided to set up an informal Neighbourhood Watch Scheme and yesterday my efforts in this direction paid off.

Yesterday afternoon I sat at my P C posting on my Blog confident that M was in the garden.  When I finished my musing I found she had taken herself off for a walk.  One of my neighbours was watering her garden and had not seen M pass by.  Shortly afterwards a friendly dog walker from a couple of streets away gave me the nod: ‘hey mate I have just seen your wife…’  As I travelled in the car to pick her up another neighbour flagged me down in his car and said: ‘I’ve just been following your wife and redirected her this way’.  Sure enough a few minutes later I hailed her and she jumped in beside me.  It gets even better than that, but more on how the evening went later.

Any reader of this post might frown and say you are taking silly risks.  Maybe my luck is in at the moment: only time will tell.  Locking the doors and throwing away the key might be a safer option.  My question would be what would that do to the morale of a highly intelligent woman who has always been fiercely independent?   Dementia may be robbing my wife of many of her attributes but I am not inclined to take away any more of her independence at this moment in time: particularly with Neighbourhood Watch on call.

Dementia: Phone Call Causes Concern

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I’m back on my phone call focus with good reason.  My wife’s G P rang this afternoon to ask me to take her in to discuss the fact that her cholesterol level was higher than it had been for a while.   He spent quite some time  explaining the risk factors and the need to go back on statins.  In his normal informal style he did his best to persuade M that she need to add an additional tablet to her daily regime.  He was well aware that he had a job on his hands, as M is reluctant to take tablets unless they are essential.

M seems very disheartened by the news that she needs to take statins.  I think it is difficult for her to grasp the importance of keeping her cholesterol within safe limits.  Like me his explanations may have been too long and complicated.  It was another occasion where KISSS  (Keep It Simple Stupid and Short) would have been applicable.   Even a G P  may find it difficult to change his style when he is trying to communicate with someone who has dementia.   All M can focus on is that she has to take another tablet for life.  She doesn’t seem to understand it is to prevent a further stroke.

The irony is we were just settling down for our afternoon siesta when the phone rang.  Another 5 minutes and the landline would have been disconnected, so we could have had a rest in peace.  No chance of that now and I fear a battle may lay ahead to persuade M to take an additional tablet  this evening.  Those flipping phones if it isn’t PPI: it’s statins.

Dementia: Mobile Madness

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It suddenly struck me this morning how I have been taken in by mobile madness.  Yesterday I Blogged on Telephone Lines pointing out the problems when some one has dementia.   Late last night I suddenly realised the contradiction between my rhetoric and my practice.  The clever words of my post do not compensate for my ridiculous behaviour: I recently bought M a new mobile phone.

Once I saw it in its box on the book case I had to laugh realising the stupidity of my action.  It’s not enough to see M already has three mobiles that she never uses: I add a fourth.  Fortunately, my one bit of wisdom in all of this I bought it from a Supermarket that will refund my money.  You can guess where I will be going very soon this morning……….

Dementia: Being Patient

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I recall a friend of mind telling me that my wife having dementia was an opportunity for me to learn how to give unconditional love and practice patience.  His approach to the condition is based on a Buddhist approach to life and E is one of my friends at a local Meditation Class.  It is the patience issue that I am Blogging about here.

I think I have probably improved my ability to give M time to think about or do things.  It is patently obvious that stroke has slowed her down in all sorts of ways.  Someone who has always been extremely capable, and fiercely independent, now struggles with simple tasks.  This gives me a problem: knowing when to assist and when to leave her to figure things out. Sometimes I get it right.  However, it is the patience with others where I struggle and if I look back just a little I can soon put myself right on that score.

My mum has vascular dementia and I have popped in on her condition for several years.  She now lives in a small Care Home a couple of hours drive away and I visit infrequently.  On many occasions I look back and shudder at things I have done, in an effort to support my mum.  I will just deal with a couple of them to remind me of my own shortcoming as I tried to work out how to deal with dementia.

I used to phone very evening to chat to mum about how things were going.  It may have taken me over a year before I gathered that these calls may have been helpful to me but not for mum.  At the end of a long day I was dragging her out of the comfort of her lounge, into a cold recess where she was often unable to hear what I was saying.   I continued my nightly routine for quite some time until it suddenly clicked:  they were pointless.  My mum had nothing to tell me as she couldn’t remember what she had been doing.

It has also taken me a while to work out how to be a visitor to someone who has dementia.  Instead of appearing like the log lost hero, I now stand back and ask those who are there every day how things have been going.  No longer do I march mum down to the pub for lunch: I take a rain check before doing anything.  Those who are there 24/7 see beyond the ‘hostess mode’ that she puts on when I visit and advise me of the best option on the day.

When I got it wrong a year or so ago mum ended up being locked in the Ladies – you hopefully don’t make that mistake twice!  So now it’s a short drive in the car, maybe watching young children playing in a park, then back to the Care Home for lunch.

My own family have a ‘hot line’ to let me know how mum is; so I am no longer hauling her out of her comfort zone to take my calls.  When I visit  try talk to others before I launch into some kind of activity.   I attempt to listen rather than talk and often just sit there holding mum’s hand.  It has taken me a long time to gather this is a sensible way forward.

When my good friend E suggested dementia gave me an opportunity to practice patience I don’t think he was just talking about my wife.  I must try to remember to be patient towards others:  it is not easy for any of us to work out how to behave with the elephant in the room.