Category Archives: Uncategorized

Dementia: Maternal Instincts

Maureen’s emotional memory remains intact; whilst her short-term memory is shot: a familiar tale with dementia.  You only have to see her in a maternal role to see that she is still the ‘full shilling’ in that mode.  When she is in the company of young children she comes into her own and has no misgivings about getting things wrong.   Whenever either of her sons comes to see her she goes into hostess mode to convince them that her stroke recovery is well underway.

She must have gone into overdrive yesterday when her youngest son popped in for a couple of hours.  He said that she never stopped talking: since he went she has never stopped sleeping!  It’s been over 24 hours since his departure and she’s been asleep for most of the time.  She keeps telling me that she is tired and all she wants to do is sleep.  I have learned in the past to ‘let sleeping dogs lie’.  Usually it takes three days to recover from a visit of her sons.   Maureen has long forgotten that her son came yesterday and has no idea what has caused her exhaustion. 

Dementia: Cognitive Stimulation

We need a ‘rain check’ from the Home Treatment Team to make sure we are on message with our approach to cognitive stimulation.  The following extract from an article in MindStart outlines the issues:

‘Mental Stimulation Activities Slow Dementia

A 2012 review of multiple research trials of cognitive stimulation staying active with dementia.pngactivities with dementia patients, like puzzles, games, and reminiscing, showed a benefit in maintaining their thinking and daily living abilities. The benefits were greater than any medication effects. In addition, there was an improved quality of life for the person and an increased ability to communicate.

Current available drug treatments have shown only modest effects in slowing the progression of dementia. However, a recent study of an Alzheimer’s activity therapy program given along with routine dementia drugs to nursing home patients with dementia, was effective at stopping the dementia from progressing further. In addition, participants were able to keep doing their everyday tasks. Effects of the therapy program lasted for at least 12 months. In contrast, the control group of patients who took only the routine dementia drugs, but did not receive the activity therapy, had their dementia progress.

Starting a Mental Stimulation Program at Home

Caregivers can carry out their own form of mental stimulation – or activity – program for the person with dementia. Here are some tips to get started:

  • Have a consultation with a dementia care occupational therapist, who can evaluate the person’s capabilities and recommend specific activities that will work. Speak to the physician for a referral.
  • Choose a time of day to do the activity program. Consider what time of day is best for the person. Often times, it is in the morning.
  • Consider what ‘activity level’ the person is at and determine what types of activities may be appropriate. Learn the person’s activity level.
  • How long the person stays engaged in the activities may depend on their level of dementia. Those with more severe dementia will have shorter attention spans. However, when the right type of activity is chosen and the right caregiver support is in place, often patients can be engaged for an hour or so.
  • Consider the different types of activities that can be provided, such as physical, cognitive, spiritual, etc. See the types of activities to consider‘.

A diagnosis of Vascular Dementia in the U K means no treatment from the NHS.  As the consultant said to us at the Memory Clinic ‘you have to accept your new reality’.   Without the right support that reality may become  Prescribed Disengagement!

Dementia: Looking Back: Looking Ahead (Week 11)

The passage below by Ann Napoletan describes how I feel at this moment in time:

Lost-Innocence_web

We have reached a stage on our journey where a comprehensive assessment of Maureen’s presentation is needed.  Her declining short-term memory and dwindling functional capacity is worrying.  Her emotional state is also a cause for concern.

I am hoping that the involvement of the Home Treatment Team will lead to a thorough assessment of Maureen’s presentation and my approach to providing suppor .  Our Support Plan needs reviewing to ensure the ongoing well-being of Maureen and myself.

It is unfortunate that at a time when we need more involvement of carers our Agency has a shortage of personnel.  Perhaps they need to review why there is such a high turnover of staff when their service users are crying out for continuity of carers.

 

Reversal of cognitive decline: A novel therapeutic program, by Dale Bredesen

It’s a shame Australia is so far away or we’d be on our way ASAP. How fantastic that there are approaches to arresting cognitive decline that don’t involve taking medication that often has a Black Box warning.

Kate Swaffer (she/her) Kaurna Country's avatarLiving Beyond Dementia™

This months Living Beyond Dementia™ blog (yes, only one again as I am too busy living beyond dementia), is on the following study (Abstract and Summary only included – follow the link to the full study),

Reversal of cognitive decline: A novel therapeutic program

Dale E. Bredesen1, 2
1 Mary S. Easton Center for Alzheimer’s Disease Research, Department of Neurology, University of California, Los Angeles, CA 90095;
2 Buck Institute for Research on Aging, Novato, CA 94945.

Abstract

This report describes a novel, comprehensive, and personalized therapeutic program that is based on the underlying pathogenesis of Alzheimer’s disease, and which involves multiple modalities designed to achieve metabolic enhancement for neurodegeneration (MEND). The first 10 patients who have utilized this program include patients with memory loss associated with Alzheimer’s disease (AD), amnestic mild cognitive impairment (aMCI), or subjective cognitive impairment (SCI). Nine of the 10 displayed subjective or objective improvement in…

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Dementia: The Bed’s Too Big Without You

I think it safe to say I’ve put up a pretty good performance in bed the last couple of nights.  Just past my 70th birthday I’ve been rather pleased with how things have gone.  I seem to have worked out how to get things off to a good start: the first moves are important as we all know and I seem to have grasped the sort of thing that needs to follow.

Having spent several days establishing a place where men are not allowed, I now seemed to have found a route into Maureen’s bedroom.  Last night followed the ritual of the previous night: no questions asked I just carried on as we have done for years.   Once in bed I kept my distance and went with our normal ritual of ‘night, night sleep tight’.  If my memory serves me right I think I managed to get a perfunctory peck on the lips -have to take things steady at my age.  We were both extremely tired and dropped off as soon as our heads touched the pillow.  In the early hours of the morning I knew I was in the right place.

Maureen was out of bed looking out of the window, she said something along the lines of she didn’t know where she was and needed to know she was in her bedroom with Paul. Then it was: ‘tell me that’s where I am and I will be ok’. How fortunate that I was lying in bed and able to make the right noises to help minimise her confusion.  You can guess where I’ll be aiming to sleep from now on but like all of these occasions it will be  a question of ‘don’t call me, I’ll call you’.  Now where have I heard that before?

Postscript:  As I post this Maureen has gone off on walkabouts without telling me.  She nipped out when I thought she was in the back garden.  It’s time to put my ‘money where my mouth is’ and leave her to roam alone for a while.  If I go and find her straight away it will only confirm she is not safe to be out on her own and always needs a chaperone.  My plan is to bump into if her is she is not back within the hour.

Great news she’s just come back after walking around the block.  Who cares she’s in her slippers because there’s a smile on he face as she says she’s ‘not walking enough’.  I knew locking her in wasn’t the way forward!

 

 

Dementia: The Invisible Woman

I have decided to integrate gratitude into my daily posts rather than make Saturday’s a ‘Small Sprinkle of Gratitude’.  I’m taking a leaf out of Jennifer Tucker’s blog with this approach to showing gratitude.

There is always so much to blog about but the bizarre events of yesterday take some beating.  I let Maureen sleep late after her performance of the night before.  I’m sure all great singers need to rest their vocal chords after being on stage for almost three hours.

 Gail or carer arrived on schedule and was off doing our weekly shop.  I decided to put my feet up and must have ‘bobbed off’, as they say round here.  When I came round all seemed quiet upstairs so I let ‘sleeping dogs lie’ for a while longer.  Around noon I went upstairs and couldn’t find Maureen and assumed she’d scarpered whilst I had been in the land of nod.  Gail returned heavily laden with shopping as I began to widen my search. I helped her unload her car and then sped off in ours to look for Maureen in her usual haunts. 

I spent about a quarter of an hour looking for Maureen around our neighbourhood..  A wider search revealed nothing so I returned home in a bit of a panic.  I was about to call the police when I decided to check upstairs once again and found Maureen asleep in bed.  There is only one word to describe what had happened: bizarre – as my search for her earlier couldn’t have been more thorough.

I have no idea what had happened.  When Maureen eventually woke I described that I had lost her; without learning anything new.  The interesting thing is that she went on to sleep for most of the remainder of the day: goodness knows what she had been up to in her ‘absence’.

Measures have already been undertaken to avoid the Invisible Woman getting up to her antics in the future’.  I have activated the alarm on the front door and keys will no longer be so conveniently kept in locks . That should put an end to her going missing or my panic attacks!  I’ve just remembered I need to update my Good Music page and there’s one number that simply has to go on there today.

I slept beside Maureen in bed again last night: ‘very interesting’ as my dear old dad would have said – more on that a little later.

Dementia: Barking Up The Wrong Tree

In the last few days I have been struggling to deal with changes in Maureen’s presentation. I have been focusing on her confusion and fears.  My detective work led me in the direction of a dip or further progression of dementia.  Then this morning I realised I had been barking up the wrong tree: focusing on symptoms rather than causes.  I had been going down a very risky path that may well have led to a referral to Mental Health and dodgy medication.

The trigger for the change in my thinking was something that Maureen said yesterday: ‘I’m being treated as if I’m stupid’.  That is a valid opinion from someone of high intellect.  As I have asserted on many occasions stroke has caused brain injury and Maureen’s recovery continues.  It is being hampered at the moment by fear and an approach to support that she regards as patronising.  Little wonder there are changes in her presentation: she is signalling she is not happy.

I am hoping that setting up the Girls’ and Boys’ Dormitories may help with the fear of men issue.  The initial signs are positive and I managed to sneak in for a brief cuddle early this morning.  There is more work to be done on helping Maureen  feel safe and establishing this is her home.

Helping Maureen to regain her confidence and become more assertive requires careful consideration.  The initial focus is easy: it is on my behaviour.  I need to follow Maureen mantra of ‘slowly slowly catchee monkey’ as I try to find a way of being that moves things in a positive direction.  As always I’ll keep you posted and look forward to feedback on how I’m doing.

 

“The Last Laugh”: seeing dementia differently

Kate Swaffer is an amazing woman and I’m inspired by the number of intitiatives she is involved in.

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

It never ceases to amaze me what I end up getting involved in! After asking Dr Mark Cross not to use one word on a Facebook page he had set up, we have connected, met over dinner, and are involved with a wonderful producer Alison Black in filming a documentary called “The Last Laugh”. Here is a trailer we have made for it…

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I could live here…

What an wonderful example to all Care Homes and Care Partners.

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

I am delighted to share this very short video about Group Homes Australia, the one residential dementia and aged care group home I believe I would be happy to live in… and I would also love Maria who works there, to look after me! I don’t usually so actively promote private or any businesses, but this one is worth sharing, and hopefully, replicating. I really do hope others will invest in major change, and join this style of residential home care soon.

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Dementia: Dump the Risky Drugs

Having tweeted two articles on this front today I have decided to reblog a post of mine from August 2015

It's My Time Now's avatarDementia: Sharing The Good Times

More on the dangers on using risky drugs for dementia from an article by Irving Kirsch in New Scientist. I make no apologies for continuing to use Irving as a resource on this Blog.  I am pretty certain if I had not read his book: The Emperors New Drug I would have remained on mirtazapine for life.

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