Dealing with variations in dementia care

Linda Harman, whose mother is living with advanced dementia, reveals her struggles in getting the right care assessments, in the wake of the recent report on the government’s Dementia Atlas.

The last few weeks have been a real struggle.

I try to help my mother to have regular access to all of her favourite things, places and people in order to keep her quality of life as high as it can be despite dementia. Provided she is generally well in herself, calm and happy to follow me then it is generally possible. All that is required is that I am vigilant about length of time between toilet visits and careful to watch that she doesn’t walk over ground that is too uneven. Recently though, there is another factor; her mood when I arrive at her care home.

I hate seeing my mother behave in ways that I know are alien to her pre-dementia self. I strive to act as her ambassador, to understand why she might behave in a certain way and to explain, on her behalf, to carers so that they can understand too, as she can no longer speak up for herself.

But this week I can no longer explain. Mum has lashed out at carers, refused to be washed, to socialise and occasionally even to eat. She has bashed the walls so hard and so frequently that her hands and forearms are covered in bruises. This is the same person that used to be a gentle soul, driven by caring for her family, keeping her house spotless, who enjoyed a large circle of friends, loved dancing and a nice glass of wine. As every journey with dementia is pretty much individual, I am not able to get an explanation myself and I feel very sad that, despite my best efforts, my mother is clearly less and less happy.

What concerns me most is the acceptance of the health system that the decline in responsiveness and wellbeing is just normal for someone with dementia. I do not accept that it should be so. I am fighting to get the local Mental Health team to come to do a review and advise us. This is taking a lot of pressurising and phone calls as, according to their records, one was carried out in May. I was not invited to attend this review and the care home have no record of it either, so who the assessor spoke to, to come to her conclusion that my mother is doing just fine, I have no idea. Mum is unable to speak for herself so I conclude that the assessment was done as a paper exercise based upon a moment of time in which Mum was content and compliant.

The dementia atlas published by the NHS this week mapped quality of dementia services against a series of benchmarks. It showed that some areas of the UK were doing better than others in supporting families with dementia. Our area was shown as one of the better ones. My experience says differently and I’m sure it is not unique…

Like any survey, the conclusion depends on the questions that are asked. If the benchmark question is “Did every person in this country diagnosed with dementia have an annual assessment?” then the answer in our personal case is yes – despite the quality of that assessment quite clearly being very poor and contributing nothing to helping my mother live well.

The good news is, that as I write this today, the phone has rung; an appointment is now offered and I get to talk to consultant psychiatrist alongside the care team next week. Result! Well, at least in having a conversation about the changes that are happening and how we can help Mum feel more content.

At present, like many people in her situation, medication is the only answer offered. I’m looking for an alternative; medication calms the frenzy but leads to further dulling of the senses and more withdrawal. It makes it more difficult for me to stay connected to her. If she is sleepy she understands me even less than usual and I cannot risk taking her outside as she is more prone to fall or trip. But if her behaviour is erratic then fewer people will come to visit. It is a dementia dilemma. I hope that the professionals can offer some sort of solution…