Over the years since my own diagnosis, I have talked and written about the profound and complicated loss and grief which I continue to experience following the diagnosis of dementia. To be honest, the phrase, “I didn’t get to say goodbye”, is just as applicable to losing some part of my functioning, capacity, including being unable to recall memories, people and now, increasingly, not remembering the names and faces of people who I’m aware I ‘know’.

Having insight into my loss and grief does not make it easier…

Substack seems to be the ‘new’ place for bloggers, and although I have set up my own space there, this site is my preferred place to reflect and write about not only the impact of living with young onset dementia, research and activism about dementia, but many opther topics including loss and grief.

The following quote about grief, from an article on Substack by John Pavlovitz, reminded me of the relevance to the harmful label of BPSD that psychiatry forced onto the ‘care’ sector.

“From the outside, grief looks a lot like anger. The external markers tend to be similar: impatience, bitterness, violent outbursts, a loss of optimism. The difference is that the source of it all is a profound loss. Something or someone has died, and this is the mourning that has come to take up residence in your chest cavity in its absence.” (John Pavlovitz, 2026)

You may wonder how loss and grief following a diagnosis of dementia relates to the harmful label BPSD (Behavioural and Psychological Symptoms of Dementia)?

Imagine if you lost your partner or one of your children, and the only advice you received was to ‘get on with it’, and no grief counselling, or other support for your grief. This would be similar to the poor advice ‘there is nothing we can do, and to our end of life affairs in order when diagnosed witth dementia, which I termed Prescribed Disengagement.

When you are first bereaved after somehting like a death of someone you love, it is normal to experience apathy, depression, agitaion and even anger, poor sleep, nightmares, a desire to isolate yourself from others.

These ‘symptons’ of loss sound familiar. BPSD wrongly labels distress as neuropsychiatric symptons of dementia, rather than as normal human responses. It has led to systemic chemical and physical restraints. For today, I will stick with the topic of grief, and in a future blog, will expand on why’ it ‘ignoring, and not supporting a person with dementia through this grief, relates to symptons of distress and BPSD.

As always, it is the time to #BanBPSD, and every other new term now being used to refer to it!!!

The dementia advocacy and care sector, and even researchers, seem to prefer to ignore our reality regarding experiencing ongoing, progressive, and extremely complex grief, or are ignorant of it. When my husband asked if there was any grief support for me, he was told by the national advocacy group here, Dementia Ausrtralia, that it is only available for care partners, and if I wanted it, I’d need to find, and fund it, myself. Below, are two excepts from my first book dementia, published in 2016.

In chapter 12 is the longest, titled “Dementia, Grief and Loss: it’s very complicated.”

But beyond my immediate family pain and the feelings of hiraeth there, my experience of living with dementia also feels like an experience of hiraeth. Indeed, it does feel like homesickness or a longing for whom and what I once was, who I used to be, the capacities, knowledge and memories I once had. I grieve for the lost memories and knowledge, the lost places of my past I can no longer recall and that often cause me to feel disconnected from myself and from the family and friends I do still have close relationships with. The homesickness for a home to which I cannot return, a home which maybe never was; the nostalgia, the yearning, the grief for the lost places of my past… This all relates to my experience of living with a diagnosis of dementia, and the fact that I can never return to being the person I once was, nor regain the knowledge and memories I have lost. (pp. 110-111)

When I think about my own experiences of grief, it seems that just when you think you are accepting an illness or a loss, your mind gives in to it again and throws you right back into the pit of grief, the sense of knowing what you are losing. It is often one step forward and then many steps backwards as you relive the intensity and anticipation of the loss caused through death of a loved one, or chronic and terminal illness. After the initial shock and severe emotional pain experienced with a new grief comes the need for help, although this is often not recognised. In the very beginning there is always a shoulder to lean on and to cry on and a helping hand. It is there for the first few days and sometimes even weeks after the diagnosis. Then it disappears. For others, their lives go on as if nothing is happening, whilst your life is crumbling down around you. This is normal, and it is okay. Your judgements are impaired; your relationships are under strain due to the constancy of your illness or grief. Your new life brings with it permanent aching and longing for what once was, and your general sense of wellbeing has the potential to completely disappear. The sense of emptiness in your own life and on occasion towards your friends is off-putting to them, and unbearable to you. Life sometimes seems void. Life with dementia can sometimes seem very hollow. The idea of not knowing your loved ones or even yourself in a mirror is daunting. Losing knowledge or even a sense of your own personal history and own identity is stressful. (pp. 112-113).

Swaffer, Kate. 2016. What the hell happened to my brain?: Living Beyond Dementia (pp. (pp. 110-111, 112-113). Kindle Edition.

#SomeonesGottaSayIt