I recently attended a webinar run by Rare Dementia Support, in which carers were thanked for sharing ‘what would have helped’. The use of past conditional is all too appropriate. Every stage of support has been one step behind what my husband needed. The following post is more of an account of ‘just too late’ than anything constructive. Experiences vary even within the UK, but I think this is an accurate reflection of what dementia sufferers and their carers experience.
As mentioned before, a diagnostic memory clinic failed to diagnose my husband in 2018. As a result, when he was finally diagnosed 18 months later (by a clinic in a major research hospital), he had missed out on medication that only works in the early stages, and it was only months away from the Covid lockdown. I expressed interest in his taking part in a clinical trial but by the time recruitment restarted in late 2020, he had declined too far (there is no testing of drugs for later stages).
To be completely fair, Covid disrupted everything – all community activities ceased and my husband could not engage with zoom sessions. Remote support from the NHS community dementia service for most of 2020 consisted mostly of my dementia navigator (sub-contracted from the Alzheimer’s Society) and Carers UK referring to each other, or to services not currently running. When I contacted the navigator to say that I was getting scared by my husband’s aggression and paranoia, I was given a number for Refuge. By the time community activities restarted most were no longer appropriate for him.
During this time I had most help from the nurse practitioners at the hospital where he was diagnosed. Although they are not designed as an ongoing support service, and the prescribing set-up was not ideal, I was able to discuss medication and alter prescriptions. They also put us in touch with services like RDS. It was only after my husband went missing and it was reported to the police, that the NHS community service made contact again. Ironically they asked us to cease treatment with the hospital to avoid confusion.
(There is another potential paragraph in here about Continuing Health Care, which we have twice failed to qualify for, but I’ll save that for another day).
So where was social care in this? In 2020 and 2021, I had assessments from access support officers who did not consider me or my husband to have any caring needs (although when my own Long Covid was at its worst they offered to place him in a nursing home, which I refused because under pandemic conditions he would have been totally isolated). By the time I spoke to a social worker in November 2021, I was already paying for 40 hours a week of care, that I had found and was funding myself. I was awarded a direct payment of 8.75 hours a week (which was then delayed by three months because they forgot to put the referral through).
It’s fair to say that there is a crisis in UK social care. Following a corporate complaint to the local authority, I finally saw a social worker in person in May 2022. By this time I felt I had reached the end of the support we could give my husband at home and I was regularly paying for 60 hours of care a week, plus respite weekends. The social worker increased the direct payment award (although this will be removed because he holds a private pension which counts as an asset). This social worker was convinced that he was too young for residential care. She did not listen when I explained that Young Onset dementia has a fast downward trajectory and short life expectancy. She recommended against a council referral, saying he had ‘no placement needs’. I didn’t find this out until I called the emergency number in November 2022. I appealed and raised another corporate complaint with a request to accelerate the appeal process. This is now underway.
I had meanwhile started to explore private referral to residential care and had a lengthy assessment with somewhere that seemed right. They unfortunately decided that he had high-dependency needs that they couldn’t support. I have since spoken to two more homes who have said the same. While Adult Social Care have said he has ‘no placement needs’, residential care homes say he has declined too far for them to accept him and I need to look at nursing care facilities.
So where are we now? Seven months after I said that I could not look after him at home anymore, we are just starting the process of referral. I have been told we are likely to need a Court of Protection capability assessment. We will be self-funding because of his assets, from his pension pot and then from a deferred payment arrangement on his half of our flat. I start a new job in January which I cannot do with the current level of disruption I experience at night. My only option now is to seek respite care while we wait for the referral process.
I wish I had something constructive to offer out of this. None of these delays happened because I failed to anticipate my husband’s decline. Despite the fact that Early Onset Alzheimer’s is a fast-moving degenerative brain disease, practitioners have continually dismissed his level of need. Let’s hope we reach the next stage soon.
The Dosette Box 