Dignity and Dementia are not mutually exclusive

Visit www.massa.org.au for information about Montessori Aged Support Services.

 

Here is the best present I received on Christmas morning; my Nanna's presence.



I don't just mean that I was grateful that Nanna was physically there in the room with us (although I was). I mean that she was truly present that morning.

Anyone who has loved someone with dementia will know what it is like to have that person sitting right in front of them without actually being present.

Nanna has been shadowed by Alzheimer's for many years now - it was subtle at first, then impossible to ignore and now it is an almost overwhelming power that threatens to completely drown the wonderful woman within. Most days Nanna is not truly herself anymore. She is physically there but her power of speech is so severely diminished that it mostly incomprehensible half-words that spill from her lips. More heartbreakingly, we rarely see the light in her eyes anymore. Her eyes look around blankly, barely focusing and rarely making eye-contact. It is as though her very soul is being disconnected from her body and we spend most of our time just with the exterior, waiting desperately for the occasional glimpses of the woman we know and love. 

So on Christmas morning it felt like our own little miracle to have Nanna be present with us. She was smiling and sparkly - her eyes were alight with love and recognition. It is the most cognisant that I have seen her in years.

In the photo above she is looking straight at the camera! I can't stress how amazing this was for us - it has been several years since we have been able to capture an image of Nanna looking at the camera because she simply (and sadly) no longer recognises what a camera is and can't respond to our encouragement.  

For comparison, take a look at the photos below and pay close attention to Nanna's eyes and her expression (or, sadly, the lack thereof):

  

These photos were taken just a few weeks before Christmas at a family celebration for my Grandad's 90th Birthday. Now let's contrast these against Nanna's expression on Christmas morning...

The two occasions - Grandad's birthday and Christmas morning - were very similar in many ways. Both events were held in rooms at Nanna's care facility. In both instances Nanna was surrounded by familiar family members in a celebratory atmosphere. Despite these similarities, however, Nanna's demeanour was extremely different on the two days. 

During Grandad's birthday Nanna was often anxious and ill at ease - rocking and fidgeting in her chair, pulling at her clothes and moving her hands incessantly. She was not able to look anyone directly in the eye and she didn't utter any recognisable or meaningful words or phrases. Nanna was sitting in that room with us but she wasn't truly there.

Christmas morning was a completely different story!

  

From the moment we walked through the door it was obvious that Nanna was really, truly there with us! She was smiling, laughing, making eye contact. She even articulated some meaningful and intentional words! The particular highlights...

Nanna referred to my mum by name! 
I almost hope you won't understand how powerful this is, because the only way you could truly feel its impact is if you have also lost (or are losing) someone to dementia. But it meant the absolute world to my mum that her mum could look at her, see who she was and SAY who she was! Just hearing "Barbara" come out of Nanna's lips was the best thing that my mum could have asked for that morning.

Nanna responded to my kiss by giving one back to me!
When I greeted Nanna with a kiss she immediately puckered up and planted one on the tip of my nose. Just for her to reciprocate like that was a huge moment for me. Often she barely responds to a kiss, let alone offers one back, so I savoured this token of her affection.

Nanna spoke an entire phrase! On purpose and in context!
This one was absolutely massive for us. Nanna is usually extremely limited in her capacity to communicate. She is usually unable to articulate an entire word and watching her try to speak - only to find nothing but incoherent babble coming out - can range from confusing to distressing all the way through to heartbreaking. So for Nanna to look Andrew right in the eye and say "come here love" (or, to be more precise, "coom 'ere loove' in her thick Yorkshire accent!) was INCREDIBLE! She said what she meant and she meant what she said! So Andrew went to her and they held hands and shared a smile. 



Nanna's presence on Christmas morning was incredible but also inexplicable. There was no identifiable reason for her happiness of mood and clarity of mind. The environment around her, the atmosphere and the company she was in were all virtually identical to Grandad's birthday. So we know it wasn't these external attributes that were calling her forth from the depths of Alzheimer's. There was just something internal, which we couldn't recognise or label, that allowed Nanna to be with us on Christmas morning.

And such is the nature of Alzheimer's, and many other forms of dementia and cognitive degeneration. The lucidity of the individual can fluctuate wildly - one day they seem almost completely gone and then suddenly (albeit briefly) they are back.

Christmas morning got me thinking about the seemingly random nature of these fluctuations and I couldn't help but wish that there was more we could do from the outside to encourage the lucidity and lessen the confusion.

Perhaps more importantly, Nanna's presence on Christmas also made me realise that I had been underestimating her...or more accurately I had been overestimating the power of Alzheimer's. I thought that Alzheimer's had eaten away at parts of Nanna that resurfaced on Christmas morning. I didn't think she had the capacity for a phrase like "coom 'ere loov"...but she did. Alzheimer's hadn't destroyed that ability - it had just hidden it.

So I started to wonder, and to worry, about whether I was underestimating Nanna overall. In the past year or so I have reached a sort of peace with her disease...it still breaks my heart to be saying such a slow goodbye to a woman I love so much but I believed that she was past the point of recognising her own descent. I found a sense of comfort in the idea that at least Nanna was no longer conscious of her suffering and couldn't recognise her own diminished capacity. We could all handle watching it from the outside, as hard as it is, as long as she wasn't stuck on the inside feeling trapped and confused. Seeing her so present on Christmas morning told me that there is far more of her left inside than I had realised. So as happy as it made me to see my Nanna again, it now breaks my heart to think of her every other day. Maybe she is that lively and present on the inside every day but just can't find a way to get it out to us. It feels so cruel.

Thankfully Nanna is surrounded by respectful support each day. If she is suffering inside then at least she has my Grandad by her side to keep her calm and reassure her. She is also fortunate enough to be in a care facility that puts a great deal of effort into its environment, care and activities.

But every single human with dementia is somebody's Nanna...or Grandad...mother...father...daughter...son...sister...brother. Each of these individuals deserves care, respect and dignity. 

Each person with dementia deserves to be believed in, not underestimated. I was guilty of underestimating Nanna and I'm grateful she was able to show me the error of my ways. 

Each person with dementia deserves the opportunity to regain what is lost, to hold onto what is still there, and to retain dignity no matter how cloudy the fog around them becomes. 

So along comes Montessori. A method of education that was devised to care for some of the most vulnerable members of society, albeit at the other end of the age spectrum. An approach that, at its very core, promotes dignity, respect and independence. A pedagogy that is applied in thousands of schools around the world...and now in an increasing number of aged care facilities. This methodology is now caring for our very youngest and our very oldest.

Montessori education certainly knows how to believe in abilities, not focus on deficiencies, and how to promote dignity and cultivate capacity. 

This post is about my Nanna - about how much I love her and how grateful I was to be with her on Christmas and for her to be with us in return - so I'm not going to launch into the technical aspects of applying the Montessori method in aged care. But I will happily point you in the right direction so that you can find out more...

You can read articles here and here...purchase a compelling book here...or even access training here!

You can also watch a beautiful (and tear-jerking) video here.

Perhaps most impressively, there is this report compiled on behalf of the US Administration of Aging (pardon the Americanised spelling there on Ageing!). The report studied the affects of a Montessori-based Activities Program (MBAP) in aged care and found that...

"...results showed that during MBAP activities, levels of constructive engagement were higher than during non-MBAP activities"  

"...during MBAP activities levels of non-engagement went down, indicating that participants were more actively engaged in the MBAP activity than during the non-MBAP activity. These findings suggest that MBAP activities has a positive impact on the participants’ impairment despite levels of ADL or cognitive impairment."

"The most notable finding in terms of engagement was in the level of helping behavior. These types of social interactions between participants were rarely found during non-MBAP activities; in fact, most of the time, the participants rarely talked with one another during the activities. More commonly, it was usually the staff who interacted with participants. However, during MBAP activities, the level of helping behavior increased significantly over the six month period. Participants began to interact with one another, reaching out to assist or comment on another participant’s success."

"...the impact was on the expression of positive behavior – expressions of pleasure, laughter, smiles – which went up during the six month period as compared to non-MBAP activities, where levels tended to go down over time. The impact of MBAP was also felt on participant’s expressions of boredom (closing their eyes, sleeping, staring). During MBAP activities, most participants were focused on the activity in either a constructive or passive way and rarely expressed any level of boredom."

Montessori for Aged Care, and dementia patients, is still a relatively new approach here in Australia, so we don't yet have our own research to replicate these results. We do, however, have lots of anecdotal examples of the Montessori approach having a positive impact for residents and care workers. (Visit www.massa.org.au for more information). 

If you love someone who is living with dementia, or living in an aged care facility, then I highly recommend that you share some of these resources with the individuals who are involved with their care.
If you are a Montessori educator then perhaps you might like to consider whether you have any resources that you could share. It could be that you have spare Montessori materials that you can donate to an aged care facility or you may like to offer some of your time to set up some activities or work with the staff there. 

Several years ago Grandad and I were discussing Nanna and I was telling him how lucky Nanna was to have him. As we spoke I told him "I hope that when I'm Nanna's age I have someone to take care of me like you take care of her". And Grandad burst into tears and replied "When you're Nanna's age I hope they've found a cure for this".

I don't know if Montessori is anywhere near a "cure" but it may be the best thing that we have for now. At the very least it might act as a cure for the prejudice and low-expectations that allow society to ignore or give up on our oldest, most vulnerable individuals. Let's stop underestimating, let's stop overlooking, and let's start advocating for the dignity of all the Nannas and Grandads of our world!

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