Although dementia can occur at any age, young-onset dementia generally refers to cases that develop between the ages of 45 and 65. This is earlier than the age at which your chance of dementia begins to increase, which is currently 65.
An enlightening but also worrying article that is far too rarely discussed or understood by not only Health service staff but also the general public. My husband developed young onset dementia at 53 years. He was still working but within three years he was medically retired but not because they had discovered dementia but because his HIV clinician made it clear that to sack him or demote him because he was unable to do his work was to quote him “inhumane”.
his HIV clinician made it clear that to sack him or demote him because he was unable to do his work was to quote him “inhumane”. This had an immediate financial impact on our household income but more importantly we were left with a puzzle. What was wrong? His problem started in 2008 it took eight years to get his first appointment with a neurologist.
It was now 2016 and something like 130 medical appointments took place over three years, including MRI scans and others as well as a lumber puncture a multiple appointments with his Hospital GP and the neurology department. Even without a confirmed diagnosis he was already receiving personal independence payment (PIP). The general opinion was that he had a disease called HIV associated neurological disease (HAND). There was almost no official information describing HAND all the symptoms all the prognosis which meant caring was incredibly difficult not knowing what to expect. Due to a fortuitous interview that we had some three years later in 2019 in London, this new neurologist dismissed the idea that it was HAND and instead confirm the diagnosis of PSP (progressive supranuclea palsy, then later acknowledge that there was some evidence of CBD, corticobasal degeneration). I remember overhearing Health officials say that this was one of the worst types of dementia. You can imagine how I felt. Losing my husband after 47 years knowing that his condition would deteriorate to extraordinary depths, there’s actually no prognosis or any kind of meaningful treatment of the symptoms or medical management.
I decided to keep him at home. As a gay couple we were aware that there’s a history of abuse in care which made any form of Support even at home extremely difficult to arrange. I was having to manage the House all of the medical support Support and my husband’s increasing inability to manage even the most simple of tasks. This progressed to him being totally dependent on me for being fed washed and the house and finances managed, continuing with the occasional medical appointment or visitor pretty well all on my own.
To this day I still don’t really know what kind of dementia he had, what the symptoms would be how to manage those symptoms how to plan ahead for what may happen, how to continue 24 Hour care without any real help or understanding until a few weeks before he died, I had a very mini breakdown. Exhausted physically and mentally. Grieving beyond belief at what was to come. Isolated. Desperate. Depleted.
In 2022 at the age of 67 this wonderful man who became my husband after 39 years waiting for the law to change died in my arms. 47 years of a loving wonderful relationship with the last 14 years of that relationship trying to handle the unknown, trying to manage uncertainty, trying to keep sane and composed and competent when everything around me was pulling me apart.
And yes, I did try to get help, from organisations out there, I did try to get information, I did lots of research,I did have some Support and an occasionalCarer and at the end I did let the hospice into our lives at home which was especially difficult as a gay couple who are not allowed by law to show affection to one another in any public situation to have that intimacy invaded as it seemed like in our home our safe place was very very, very difficult. At the end I asked for us to be left alone so that I could tell him how much I loved him and how he transformed my life when I first met him I made me not only the person I became but inherited his compassion and love and patience. I told him all of these things and how much I loved him and he died gently in my arms.
Bottom line. The support for people with dementia is woefully in adequate it does not recognise different cultures and creeds and history and relationships. It doesn’t comprehend the pain of seeing somebody you love lose disability to function to do even the simplest thing, especially when you’ve known them to be a source of power and energy and potency. Health Services okay they don’t know enough about it. They don’t know the prognosis the symptoms and even to some extent the medications appropriate for treating your loved one. My experience was that once you get a diagnosis you’re on your own.. This needs to be better we need much more understanding by medical services. We need meaningful support not just pieces of paper and being given webmail addresses we all need practical help. Frankly, it’s too much especially for those who don’t have reliable family support. This has got to change. We should treat dementia like other potentially life-saving illnesses with the full support of the health and care services are not the worry of funding everything including all the consumables that become essential for hygiene and comfort.