“Where words fail, music speaks”

“Where words fail, music speaks”, a quote from Hans Christian Andersen, is particularly true of times when Mum becomes frustrated, agitated and verbally abusive and nothing that I say makes a difference.  It is then that I put on some classical music and it works wonders.  Mum calms down almost immediately, I get a mental ‘time out’, and we connect over a shared pleasure.  A win-win situation.

Along related lines, an article that I recently read, entitled “Tuning in to memories helps people coping with dementia”,  talks about a “Music & Memory” program where each participating patient is given an iPod Shuffle containing popular songs from when they were 15 to 30 years old.  According to researchers, this age range is the happiest in a person’s life.

The program uses music to “tap into deep memories that are not lost to dementia” resulting in participants feeling more like their old selves, being easier to calm down, and also feeling happier, safer and more reassured.  One patient, who hadn’t uttered a word to his wife in six months, suddenly started singing and smiling when listening to the iPod.

Using music in this way is just one example of a therapy where tapping into past memories results in calmer and happier dementia sufferers.  Similar success has been achieved through the recreation of familiar environments from patients’ pasts (times to which they have often regressed).

One centre has recreated an old-style barber shop where residents can get hair cuts for the old-time price of 65 cents.  There is also a 1947 Dodge car to sit in, a nursery, and even an Elvis impersonator to entertain residents.  This recreation of the past is intentionally designed to help residents, who have regressed to that era, feel comfortable and happy.  The result is that dementia residents become less agitated and less aggressive.

Hogeweyk has been created to give the false reality of a seemingly normal village (including houses, movie theatre, shops, restaurant etc.) to its residents, all of whom have dementia.  Staff, trained to deal with severe dementia sufferers, play roles such as shopkeepers, waiters, and postal workers in order to make life seem as normal as possible for residents.  The result is that residents lead more active lives and require less medication than those in other facilities.

Whether by recreating memories through music or creating false reality situations, making dementia sufferers happier and calmer (causing them to require less medication and to lead more ‘normal’ lives) seems worth the effort.

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Why You Need To Know About Dementia

The first things people think of when they hear the word ‘dementia’ are ‘Alzheimers’ and ‘memory problems’ but there is much more to it.  To be classified as having dementia a person must have significant impairment in at least 2 out of 5 core mental functions (only one relates to memory).  Alzheimers, the most common type of dementia (affecting around 70% of sufferers), is only one of 80-90 different types of dementia.

What is dementia?

According to dementia expert Teepa Snow:

Dementia = Brain Failure

It is not a normal part of the aging process.

At least 2 parts of a dementia sufferer’s brain are dying and the mental decline that sufferers experience significantly affects their ability to lead independent normal lives.

It is important to realize that for all dementias:

  • they get progressively worse
  • there is no cure
  • they are terminal.

Why you need to know

There are 44 million dementia sufferers worldwide with 135 million expected by 2050.  This dramatic global increase will result from longer life expectancies and aging populations.

In Australia, 10% of people over 65 and 30% over 85 have dementia.

There are currently 342,800 Australian dementia sufferers and this is expected to rise to 900,000 by 2050.  Of the 342,800, about 25,100 have Younger Onset Dementia, some as young as 30.

Dementia is the second highest cause of death in Australia with a death ratio of 1 male to every 2 females.

About 1.2 million Australians are involved in dementia care but it is anticipated that by 2029 there will be a shortage of around 150,000 dementia carers.

These figures indicate a high likelihood that you may develop dementia, know someone with dementia, lose someone to dementia, or have to provide care for someone with dementia.

One concerning statistic is that 50-80% of people with dementia in developed countries are not diagnosed or in primary care.

It is important to learn to recognise the symptoms of early stage dementia such as trouble remembering familiar words, and other memory loss.  Early diagnosis is key to getting the most benefit from treatments available and giving enough time to plan future care.

In this blog I will be discussing what’s new in dementia care as well as sharing details of my journey caring for my mother, in the hope that it will be of benefit to someone either through the common unity of shared experience, helpful insight, or just recognition of a symptom. Stay tuned!

Personal Narrative

I am fortunate to have a wonderful mother that I have always been proud of and that I both admire and respect.  I have been slowly ‘letting her go’ for almost two years now.

Mum lived overseas, on her own, for three and a half years after the death of my Dad.  It became increasingly clear from phone conversations that she had memory problems and we were worried that she might forget something on the stove, or might leave clothes drying on the radiator.  So, the decision was made and Mum came to live with us.

It wasn’t long before reality set in.  Mum had changed.  Dementia the Doctors said.  I expected her to be the same, only with some trouble remembering things, but I was wrong.  The changes are much more fundamental than that.

There are, of course, memory changes.  Mum can’t retain new information and has forgotten large chunks of her life.  She forgets that she has eaten and won’t believe that she has.  She forgets where she is (country/state/town), the direction of her bedroom or bathroom, and the names of my children.  She often thinks things are as they were 30 – 40 years ago.

There are physiological changes such as incontinence and trouble swallowing.  Nobody mentioned those!

Then, there are the behavioural changes.  Mum is rude to people and she can also be racist.  It can be embarrassing.  She also talks to herself out loud about things that are rarely pleasant to hear. She was never like this before.

In the beginning I went into fixing mode.  Who was this person?  She looked and sounded like my Mum but certainly didn’t act like her.  I thought that there must be some way to fix her, to get back who she was.  I tried many different things but was always met with apathy, hostility or resentment.  I was floundering, stressed, guilt-ridden, and uncomfortable about assuming the ‘parent’ role in the relationship.

Later, I discovered videos of dementia expert Teepa Snow.  I learned so much from these and from the stories of other carers.  I learned that there is more to dementia than I knew.  I learned strategies for coping and for effective interaction with Mum.  I learned to ‘let go’, to ‘breathe’, and to take care of myself first.

Caring for Mum is part of my life now and I hope that sharing my journey will help other people caring for dementia sufferers just as others’ experiences have helped me.

My Avatar

Avatar imageI wanted my avatar to symbolise remembering so I drew this representation of tying a ribbon around the index finger to remember things in the yellow and purple colours of the forget-me-not flower.  The image signifies my hope that my Mum will remember me throughout her battle with dementia and also reminds me that during difficult moments, caused by the dementia, I should remember the person that she was and not focus on what dementia has done to her.

My avatar is licensed under a Creative Commons ‘Attribution-NonCommercial-NoDerivatives 4.0 International License’ (http://creativecommons.org/licenses/by-nc-nd/4.0/) allowing copying and redistribution (original form only), with proper attribution, for non-commercial purposes.