A moving move…

For the past 26 years I have been advocating and pontificating about the institutionalisation of older people, the loneliness, helplessness and boredom they experience and the role of Caregivers in creating a life worth living. I have lectured and trained and workshopped, often considered “an expert” in the field (a title I would never take on for myself!). I have stood on the world stage presenting research on long-term care and how this should be changed. I have helped families and friends with transitions in care and how to deal with guilt and the emotions around having to care for an ageing parent. I never thought – as we do – that one day it might be my turn.
Over the last few years, especially after the death of my Father two years ago, I saw my Mother becoming more lonely and helpless, depressed, frail of body and mind. Her days became shorter, nights longer, memories fading and health deteriorating. Even though she lived in her home with her beloved Sally dog, had a live in companion and friends popping in, she was becoming more and more detached.
A series of bad falls eventually took their toll. It became clear that she can no longer live in her home – she needed more fulltime care and support. The more my sister and I tried to ignore the signs, the clearer it became – my Mom will need to move to a Care Home. While we were very brave to make inquiries and arrange the necessary with the local Care Home, negotiating this with my Mother was incredibly hard. My Mother was the Matron of this home for many years. Like us, she never ever imagined that she would become a resident there. Feisty, strong willed, stubborn. Like Mother like son and daughter we are.
En route I stop at Builder’s Warehouse to buy new flooring, a bedside cabinet, bathroom vanity and other odds and ends to make her room – all of 3,8×2,9m – less if a cell and more of a human habitat. I lose my temper with slow service, realising how tense I am at the thought of what I am about to do…moving my Mother to her last home, giving up her home of the past 22 years.
Saturday morning we go directly to the old age home. I realise that I avoid going home first in fear of facing my Mom. We spend the day putting in a new wooden floor, putting up shelves. Almost every person in the home comes to look, commenting on the two “handy men”, asking questions and commenting on how beautiful the new floor looks. Exhausted we drive to Witsand. The mood at home is sombre, as much as my sister tries to be positive…she has done all the personal tasks of packing clothes and bedding and personal items. My Mother abdicates. Tells us we have to decide what we think is best…
On Sunday we take her best friends out to lunch. Everyone tells her how happy she will be. She does not look convinced, simply hangs her head and closes her eyes. We order pizzas for supper. We pack, my sister washes and irons. We organise forms, Mother has to sign the house rules, which she reads slowly and thoroughly. A silence hangs in the house as she keeps her one hand on Sally sleeping in her basket.
At last it is bedtime. I go to her room to say goodnight, she is sitting in bed, praying. Her one hand covers her eyes, the other is rubbing her shoulder. I wait outside her bedroom. It feels like forever before I hear her moving in the room. I go in and sit next to her on the bed. The conversation that follows is too heart wrenching to repeat here. I can no longer be brave. My sister comes to the room and sits on the bed with us. For that moment our worlds stop as emotions take over.
This morning we take her favourite chair, a small fridge, all her sweets and chocolates and rusks, a few photographs. The room now feels more cheerful. When she arrives with my sister we unpack and organise. People pop in, the staff welcome her with warmth and open hearts.
I cannot imagine that I have to leave her there. I bring Sally to sit with her on the bed for the last time, she tells Sally to be a good dog and to behave herself in PE. We leave her sitting on the bed, small, old, frail. Our strong Mother. But safe. Surrounded by people she has known for the past 60 years.
The sun sets as we drive back to Cape Town in silence. I always thought I understood what families went through – I have seen this so often. Tonight I know that no one can ever understand this strange phenomena when our parents become so frail that we have to make decisions on their behalf, the turmoil of emotions and doubts. I see her lying in the single bed in her tiny little room. I cannot help but wonder who will do this for me one day…
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za

The Move

We drive in an uncomfortable silence to Mossel Bay for the appointment with the physician. At Albertinia my Mom tries to see the two elephant in the game reserve. I see them standing close to the road, mother and child. She misses them.
After her last bad fall in the bathroom she is too scared to walk, complaining of pain in her leg. The X-rays showed a cracked vertebrae. She can no longer go to the bathroom on her own.
My drive to Heidelberg where I picked her up was also in silence. I tried to listen to a podcast, switched it off. Then some music, but preferred the silence. There are so many thoughts, unresolved emotions and uncertainties. I have been giving advice to people for the past 26 years on parents moving into Care Homes. I never thought that I would have to do this one day….somehow, I thought it would not happen to us.
My Mother was the matron of the local old age home. She lived in the home for many years, always on duty. She loved her job, and was very good at it. She brought light and love and laughter into the home. She was criticised for always opening doors and windows. She loved the garden, helped out in the kitchen and was a real death doula. She saw every resident every day.
Living with a companion after my Father’s death was not as easy as we thought it would be. One resigned, a second one was recruited. It was not working for my Mom. We tried. There was not that match, connection that we hoped for. After two years we realised that my Mother was getting lonelier, and that she was depressed. The old age home suddenly became an option – for us. Certainly not for her. The doctor eventually convinced her, and yet she could not imagine herself moving.
We went to look at a room – the deja vù of going back to this place where I spent many years of my life was eery. It felt as if nothing had changed. Indeed the sister-in-charge when my Mother was the matron was still there. She had been working here for 47 years. The room is north facing at least, right next to the entrance. We try our best to be upbeat, chatting to friends who had also made the move, pointing at how sunny the room is. All 3,5×3,5 meters of it. Small basin. Brown cupboard. Linoleum tiles. There is a Hibiscus in the front of the window. We don’t mention the fact that the shared bathroom is down the passage.
My Mother’s joy in life (and slight obsession) is Sally, the Maltese poodle (well sort of Maltese…) who is not allowed to move with her. We don’t discuss this. I am not brave enough. I can give advice, consult, convince others. But not my own Mother. I feel completely helpless, cruel, a failure for not having made a better plan.
Mossel Bay feels a million miles away. We comment on all the trucks on the road. Silence. My Mother says the fields are dry. I agree. The road feels endless.
The physician’s offices have chairs that are too low for older people. An explosion of red Anthuriums adorn the desk. The ladies behind the counter chat loudly, typing away on their computers. We wait. And wait. An hour after the appointment time we are called in to the doctor’s surgery. My sister joined us from PE. We sit in a row in front of his desk. My sister says like school children in the head master’s office. His chair is a Pilates ball. Somehow his surname rings a bell…
My heart sinks to my feet when the Physician walks in….the same man who would not honour my Father’s Advanced Directive after his stroke. He does not recognise me. I screamed at him at the top of my voice two years ago – the nurses had to close the doors to the other patient’s rooms.
He is thorough in his investigation. Almost impressive. He thinks my sister and I are husband and wife. We help him out. My Mother is confused. We help her out. We go for lunch (it is not after 16h00). My Mother has her favourite pancakes with cinnamon sugar. She is old. Frail. Stoic. Stubborn…but laughs at herself. My heart breaks.
On the way we saw an ambulance with flashing lights going at great speed. I remind my Mother that she once was the local ambulance driver – often we would wake up in the morning to hear that she had taken a patient to Tygerberg or Groote Schuur in the middle of the night – a 360km ride. At 08h00 she would be back at work. She smiles at the memory. I tell the doctor that she was also the Midwife. And District Nurse. And Matron. My formidable Mother who cannot remember what she had for breakfast. My Mother in whose footsteps I followed, trying to create a life worth living for older people. I think I failed…
Tomorrow I go to fix up her room, trying to redeem myself by making it pretty. On Monday we will take her to her new “home”. I think (hope/pray?) that she will be happy. My heart breaks…
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za

The need for physical stimulation

May 2022 bring new insight and understanding to the world of people living with neurocognitive impairment. And peace to the rest of us… What happens to the physical needs of people living with dementia? Do they simply disappear? We all have the need to be held, to be nurtured through physical contact and stimulation. Over the past year I have heard several stories of nursing home employees being shocked and disturbed by what is labelled as “disinhibition” – when people living with dementia show their needs for stimulation by touching themselves of others in a loving, caressing way. Doctors are called and medication prescribed to stop this “dysfunctional” behaviour. Basically, a chemical restraint is administered to disconnect the person from their need for physical/sexual/sensual stimulation. I often wonder what it must feel like to live a life where there is almost no physical (sensual) stimulation – no one who touches or hugs you in a loving, holding way, no one who touches you in way that makes you feel loved and connected. Most human beings thrive and flourish in loving relationships. When we simply become an object to be taken care of – washed, dressed and fed as a routine task – what happens to our sense of Self? How do we manage without these affirmations? This short film is a poignant portrayal of the need to be physically connected – regardless of the sexual label that is assigned to it. Straight, gay, lesbian – as humans we need physical touch and stimulation to make us feel alive. Could it be that many of the distressed reactions that we see from people living with dementia are perhaps a reaction to a need for touching or holding? A desperate cry for stimulation to feel that they are still alive, still human?
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

Primary progressive aphasia

I have not been here for a long time. Stranger times we could not have wished for, and we are affected by it in different ways. Like the experience of living with dementia, I do not think that there are two people who have experienced COVID-19 the same way. We all come to this monster with our own set of vulnerabilities: mothers who have to home school, fathers who lost their jobs to name but two of the most obvious ones. Then there are the many, many friends who lost loved ones. And the many, many friends who lost their sanity to conspiracy theories…
COVID-19 is extremely harsh for many people living with dementia who find this incarceration on top of being incarcerated in their own world extra difficult to cope with. Loneliness and isolation are not good for most people, let alone those who are more vulnerable. I have no advice, no pearls of wisdom.
I do want to share a story of a remarkable person I met a few weeks ago who is living with progressive aphasia. Whilst I have heard of this, it was a first for me to meet someone living with the condition.
www.aphasia.org/aphasia-resources/primary-progressive-aphasia/ <www.aphasia.org/aphasia-resources/primary-progressive-aphasia/> “Primary Progressive Aphasia (PPA) is a neurological syndrome in which language capabilities become slowly and progressively impaired. Unlike other forms of aphasia that result from stroke or brain injury, PPA is caused by neurodegenerative diseases, such as Alzheimer’s Disease or Frontotemporal Lobar Degeneration. PPA results from deterioration of brain tissue important for speech and language. Although the first symptoms are problems with speech and language, other problems associated with the underlying disease, such as memory loss, often occur later.
PPA commonly begins as a subtle disorder of language, progressing to a nearly total inability to speak, in its most severe stage. The type or pattern of the language deficit may differ from patient to patient. The initial language disturbance may be fluent aphasia (i.e., the person may have normal or even increased rate of word production) or non-fluent aphasia (speech becomes effortful and the person produces fewer words). A less common variety begins with impaired word-finding and progressive deterioration of naming and comprehension, with relatively preserved articulation.
As with aphasia that results from stroke or brain trauma, the manifestations of PPA depend on what parts of the left hemisphere are relatively more damaged at any given point in the illness. The person may or may not have difficulty understanding speech. Eventually, almost all patients become mute and unable to understand spoken or written language, even if their behavior seems otherwise normal.”
The person I met is in her early 60s, a chartered accountant who excelled in her career. Listening to her story made me realise again how little we know about the workings of the brain. This prompted me to listen to the podcasts of Dr. Lisa Feldman Barret Website <www.google.com/search?gs_ssp=eJzj4tTP1TdIqUgqMTZg9BLJySxOVEhLzUnJTcxTSEosKkotKQEAsR0LNw&q=lisa+feldman+barrett&oq=lisa+feldmann&aqs=chrome.1.69i59j46i10j69i57j0i10l3j46i10j0i10l2.5793j0j4&sourceid=…> who questions just about everything we thought we knew about the different areas of the brain and the functionality of these different regions. Our experience of being-in-the-world is not simply a brain function located in a specific part of the brain, which when damaged, present a certain dementia syndrome.
And whilst the really clever people are trying to figure the brain out, ordinary people like this remarkable woman is trying to make sense of this strangest of phenomena. Losing words. Simple as that. Knowing what you want to say but not finding the words to say it. The frustration must be unbearable. Around the table are her two children, her partner and his two children. They listen patiently to her telling of her story to me. I know they have heard this story many times. Yet, not once does one of them interrupt her, or help her when she takes long to find a word. I can see them fiddling with a pen or looking away, trying their utmost. And they succeed. And I see how much this means to her that no one is edging her on or trying to hurry up the conversation.
I am in awe. This is what matters. Family. Connection. Patience. Love. Understanding. Holding space.

Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

Come, sit next to me.

Come sit here next to me. Somehow this sentence is always comforting. It is an invitation one expects from someone who cares – a friend, a lover, a parent or grandparent. It feels comforting, reassuring, welcoming. And non threatening. We are on the same level, and I don’t have to feel that you are looking at me. We can look in front of us, non confrontational. And I can feel you next to me. I might even hold your hand or place my hand on your knee. Gently.
We do not always have the courage to look someone in the eye. Sometimes we just want to avoid the reality of a stare, the vulnerability of facing someone or something. Then we need to just sit next to someone. I want to suggest that it is a way of dealing with the difficult things in our lives – pain, sadness, loss, trauma, fear. We are taught that we should face things head on, that we should look them in the eye, stare them down, be strong, be brave. Stand tall. Sometimes we simply do not have the courage to do this and just want to run away. Well maybe “come sit here next to me” is an alternative.
For many people dealing with a loved one who is living with dementia is too much to face at times. We do not have the answers as this is not what we signed up for. We have no idea what to do and beat ourselves up every time we make a mistake. We feel terrible when we are not the brave superstars that everyone says we should be. We lie awake at night, worrying about where this is going. We always feel that we have to ACT, that we have to DO, make things better, solve problems and have answers.
What if we simply invite this “unknown” to come and sit next to us. To be simply BE with that feeling – the fear, anxiety, anger or hurt, the unknown. Invite it to come and sit next to you. Close enough to feel its presence. Next to you so that you are aware of its presence, but don’t quite have to look it in the eye. Close enough to feel it, smell it, hear it breath. And just be with it, in the now, sitting and getting to know it. Then perhaps put your hand on its knee, gently feeling what it feels like. No need to talk or to explain or to answer questions. Just BE.
In this way we can get to know each other on a much deeper level. Sit there for a long time. Watch the sun set. Hear the birds. Don’t rush. Then get up and go on with your life. Maybe make a date for another sitting tomorrow. And the day after. And perhaps you will get into a pattern of sitting comfortably with the discomfort of whatever it is that is difficult for you. The same would apply for your loved one living with dementia. You do not have to talk or do anything. Ask them gently “come, sit here next to me”. Your presence is the biggest gift that you can ever give someone. Be generous with it, for it will open your heart and your mind to receive that person’s vulnerability and share your own.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

Anticipatory grief

What Is Anticipatory Grief? “Anticipatory grief is defined as grief that occurs before death (or another great loss) in contrast to grief after death (conventional grief). Rather than death alone, this type of grief includes many losses, such as the loss of a companion, changing roles in the family, fear of financial changes, and the loss of dreams of what could be.”
My friend is experiencing a deep sense of grief. Her husband is living with dementia. Amidst the challenges of COVID and a deepening sense of global angst, this grief is gripping and at times overwhelming. I have seen this often, and mostly it manifests as a withdrawal or disconnect from the person who is expected to die. Many, many people in fact take leave of a loved one long before their death as a result of this anticipated experience of loss. If nothing else, this process of anticipatory grief is as real as is the grief experienced after a person has died.
The sad thing is that this reaction to impending loss means that both the person who is grieving and the person whose death is imminent are losing out on quality time and connection. Let’s just stand still here for a minute. We are all going to die. We are all going to die. I am not for a second diminishing the fact that anticipatory grief is not a debilitating emotional condition.
However – I learn from my friend. In her deep sense of the anticipated loss she is getting closer and closer to her husband. She has forgiven him all the little things that – like in every long partnership – were obstacles on their way. She sleeps with him every night. She holds him, laughs with him, lives with him and loves him more than she has ever done before. She embraces their time together, she is fully focussed on his needs. She honours him as husband and not as “patient”. She props him up, makes sure that he is always immaculately dressed, groomed, that his teeth are flossed and the hair in his ears and nose trimmed. He wears a spectacular pair of spectacles, and an even snazzier pair of sunglasses. He is first and foremost her husband and lover – in spite of the fact that he loves with advanced dementia.
I always say that death teaches us how to live. But it’s too late when someone dies to have the life we should have had with them. That is why I think anticipatory grief is a good thing – IF we are not paralysed by it. So. Think of the people you love. Try and imagine their death. Sit with that, visualise it, feel it deep in your Soul. Sit with it a bit longer. Now get up and embrace the life you have with them. With open arms and an open heart.
When next you hear someone say “she is no longer our Mother” or “we don’t visit her in the old age home because she doesn’t know” – think of this. (S)he is always your Mother/Father/Husband/Wife. Always. Even after their death they will remain that. Death – and our anticipation of it – must be foremost in our minds. It will teach us to be more present, to be more mindful, to appreciate how precious this life is. And it will hopefully bring us closer here and now.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za


We are all interrelated and interdependent. No person exists merely as one person. I am the becoming of my mother and future. Our children are our expression. In Afrikaans the word “vergestalt” describes how language gives meaning, makes concrete our feelings and emotions. We express ourselves through language. But what if I start to find language difficult? Does that mean that my feelings disappear?
People living with cognitive impairment often find language difficult. This means that the way that they express themselves becomes difficult. If we cannot say how we feel it does not mean that we stop feeling. On the contrary, I think it often makes our feelings stronger. So inside of us things would start boiling and percolating, all these feelings and emotions and thoughts that we can no longer express are now all bottled up inside. Whilst many people communicate in non-verbal ways, and often do so very well, it is our understanding and interpreting of their non-verbal communication that lacks insight and understanding. We all come to each other with our own filters and preconceptions. It is very hard to be completely open to the message that someone is trying to express, especially when that message is expressed in a non-verbal way.
The result is that people living with dementia will often simply stop trying to communicate. NOT because they are living with dementia and lose their ability to communicate, but because we simply do not have the ability to be present enough, take the time and listen intently enough to “hear” them. The problem lies with us, not with them. Slowly their frustrations will get the upper hand and they will withdraw inward more and more. They will consciously cut off from the world because it becomes just too hard to navigate our inability to communicate with them.
The further dilemma is that the world also then gives up, thinking that the person with dementia no longer FEELS, because they no longer express their needs, desires or thoughts. There can be nothing further from the truth. And then, we stop treating people living with dementia like human beings. We let them sit in a chair for an entire day without any meaningful engagement. We talk over them. We administer tasks like bathing and dressing without as much as acknowledging them, let alone asking their permission. We crush their medication into their food when they refuse to swallow it. We dehumanize them to the point where they simply become living dead people. Bodies. Numbers.
It is very hard to bring about any change in the way that people living with dementia are treated in many residential care homes. I see a new interest in this globally, with the USA focussing on a new “Care for Our Seniors” act being proposed as a step towards transformation. Sadly, the focus (in my opinion) is again off mark. Unless we start with the rights of the people for whom we propose to care, no amount of quality indicators or workforce development or structural changes will make a difference. Yes, employees need to be paid more. However, an increase in pay will not improve care. The fanciest building in the world will not create a life worth living. The best standards, and the best oversight of such standards will not change the hearts and minds of the people who care for the vulnerable.
It is only when we get to the point where we truly understand the ecobiopscychosocialspiritual complexity of our being-in-the-world that we start seeing change. From the inside out, not the other way around. Andries Baart’s www.andriesbaart.nl/presentie/ <www.andriesbaart.nl/presentie/> brings us to the essence of care. We need to shift our focus away from the concrete towards a more holistic approach, one that is truly ethical ethicsofcare.org/becoming-a-care-ethical-institution/ <ethicsofcare.org/becoming-a-care-ethical-institution/> These are very hard questions that we need to ask ourselves. They require that we become very still, that we look deep inside, that we build the bridge of empathy towards a greater understanding of the vulnerability and precarity of life in general. Only then will we truly see the person behind the disease and begin to connect on a more spiritual level, honouring the Soul of the person living with dementia and those who work with them.
Somehow I think my suggestions will fall mostly on deaf ears. We want to write policies, create standards, police people. I will not give up.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>


We have slumbered into complacency accepting the status quo. We must wake up. Chances are that we – yes YOU – will grow much older than what you thought you would. Imagine…being 85. Try and visualise yourself as an 85 year old. Take a good look at yourself in the mirror – what do you see? Can you actually visualize yourself at that age?
Think of yourself in so many years from now, when you have become more and more of who you are now, all the sharp edges are now sharper, the blunt ones are blurred more than they are now. You are a more difficult version of yourself. Do you like this older version of yourself? Are you gracefully accepting the changes in your body – having to get up three times a night to go to the toilet, being perhaps hard of hearing, maybe have three sets of spectacles (one for tv, one to read, one to find the other two pairs). Perhaps you live alone. Or maybe your current relationship has fizzled out to a droning irritation. Your children annoy you and you avoid your grandchildren at all costs. Worst case scenario!
Maybe it is not the worst case scenario – what if you realised that you have started to be slow of cognition. You really cannot remember important events, names, dates. You have to leave sticky notes everywhere to remind you of your chores, your passwords, your appointments. Sometimes you read the sticky notes and you have no idea why you made the note in the first place. You feel terribly insecure. You lose track of time and become confused in conversations. Your children shout at you when you nod off in conversations, but you find it is your only escape. Sometimes, in the middle of a family gathering, you want to just scream at everyone at the top of your voice to LEAVE YOU THE HELL ALONE. You feel incredibly sad and lonely.
You wake up in the middle of the night knowing that something is wrong. That something is really wrong. You fret and worry about what your children are discussing behind your back. When you wake up in the morning, exhausted, you simply do not have the energy to tackle the day, least of all because you have no idea what day it is.
Confusion is a terrible condition which often presents itself to older people, for many reasons, and is extremely debilitating. People get confused because they have no reason to get up in the morning, no purpose, with one day flowing into the next. Confusion can be as a result of dehydration, or poly-pharmacy. Often people do not take their medication according to the doctor’s prescription (AFTER meals, last thing at night etc) which could result in an impaired homeostasis or iatrogenic disorders (side effects of medications or other well intended medical interventions). Incontinence often appears as another “old age problem” which is seldom discussed – an acute bladder infection or urinary tract infection could lead to transient incontinence, which if not dealt with properly can lead to chronic incontinence. One of the most common signs of this condition is confusion.
A long term depression will lead to confusion. Up to 80% of older people (especially those in long term care) suffer from depression, which will lead to confusion and other so-called “symptoms of dementia”. Too often older people are dismissed as “just being old”, when in fact they are at the mercy of conditions that could easily be solved with a proper geriatric assessment.
Confusion should not be confused with dementia. People living with dementia can often be confused, but not all older people who are confused are living with dementia. We need to distinguish between dementia, depression, delirium and confusion. Dementia is a diagnosis by exclusion – there are a host of conditions that need to be excluded before even thinking that a person might be living with dementia.
Point is – we are all growing older. We will all be at the receiving end of at least some of these issues. The bigger question is – how would YOU like to be treated? What are you investing at this early stage of your life to make sure that you are treated with dignity and respect, that people listen to you, care about you and will care for you? Don’t wait until you are 85. And perhaps if you are not quite ready to look at yourself in the mirror, look around you at older people. Well, sadly most of them are under lock and key in “old age homes” so you might not see many of them…. But try and connect with them. See if that is the way YOU would like to Be when you are old one day.
We need to start raising more and more awareness of how older people are treated in society. If for no other reason than to make sure that by the time WE get there, we will not be locked up in institutions that profess to be there for our protection. Old age is not a crime for which you should be “admitted”. Educate yourself, decide today what your old age will look like. Make the invest to ensure a life worth living!
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

What if….

I wonder what would have happened if we considered dementia to be an “altered state”, reframing it as not a syndrome or an illness, but a different way of being in the world. What if there had never been this obsession with the biomedical rhetoric of brain dysfunction or cognitive impairment? What if people who were forgetting or who saw things that we could not see or who became detached from our way of thinking or looking at time differently were considered not demented, but living in an altered state of consciousness. What if we honoured them as people who were in touch with their higher Self, or in touch with a world beyond the here and now?
First of all I think these people would be living a life not filled with fear and anxieties. They would not be labelled as mad or demented, they would not have what we label as “behavioural and psychological symptoms of dementia” nor would they “wander” or “vocalise”. They would be fully integrated in our lives, they would be living in the now, something that most so-called evolved Souls long for and spend lots of time and money in spiritual retreats to try and attain. They would sit among us, we would look up at them, and we would treat them with respect and reverence. If they want to walk, we would walk with them. We would not play childish games with them to cajole them out of their sense of now, nor would we ask them stupid questions to “test” their cognitive ability.
For you see, if we do not frame their altered state as a sickness we would not have to test or assess or screen them, we would simply accept them for who they are, where they are. We will aspire to be like them, we will sit with them to learn from them learners at the feet of wise people. We will not medicate them or tie them to chairs. If we see them as Elders, wise people who are our teachers, they will be exactly that. We will learn patience, forgiveness, and tolerance. We will want to be in their sacred presence.
Is it not time we start to reconsider “dementia”?
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>


The new DSM 5 (Diagnostic and Statistical Manual of Mental Disorders) ensures that there is a diagnosis for every possible aspect of human (mis)behaviour. There seems to be a “gold standard” of what would be considered “normal”, and the rest of us are truly certifiable. Or certified.
Whilst it is really good that we have a vocabulary for all the millions of variations of being-in-the-world (introvert, extrovert, non-binary etc etc), we have also created a litany of labels for human behaviours and articulations that makes one wonder who of us is not “sick”…
People living with different abilities (and let’s be mindful of ableism) or people living with dementia are often prime targets of our diagnostic labels. In my opinion, people use these labels to hide their inability to understand or really see the person behind the behaviour. As I have often mentioned, every action is a reaction. When we find ways of expressing ourselves difficult, we react. All of us do – I run away from noise, conflict, uncertainty. I am (extremely) grumpy when I am in pain. I get (extremely) irritated when I am tired. I sulk when I am forced to do things that I do not like doing. Whilst we can be clever about our internal locus of control and mindfulness, we react, as much as we profess that we respond.
People living with dementia are almost always on high alert – except for the millions who are drugged or chemically restrained. Like people who are deaf or blind develop highly attuned other senses, people living with dementia have highly developed and sophisticated sensory perception. Smells, tastes, sounds, and of course feelings are almost always on high alert. And they respond to these in ways that are not always clear to us. Here is where we have to become ethnographers – trying to get to the message behind the behaviour, remembering that a lot of the response comes from a place of feeling insecure.
When things change in the world of someone living with dementia it could elicit a response that does not necessarily correspond directly with the stimulus. It might be that the response comes a lot later once the person has filtered the information. And of course the response may seem to have no correlation with the stimulus. The important message is that the person is trying to tell us something, or at least that they are responding to something that they think or feel.
The minute we label this response, we disconnect the person from their being-in-the-world and run the risk of eroding their agency.l, even more so when we attribute all behaviour to “the dementia” or “they are now at that stage”. Of course this is not an easy or simple course of communication. Sometimes we simply do not know what is happening in the lived world of other people, how much more so when that person’s responses are a riddle to us…
So – what is the upshot? Don’t label (he is paranoid). Don’t try to fix (maybe we should hide these objects). Accept (I see you put the flashlight in the fridge). Validate (I can see that you are upset). Be honest (I don’t know how I can help you right now). Take the blame on yourself (I am confused/scared/uncertain). Affirm (we will figure this out together. For now I need a drink…)

Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za