How early dementia diagnosis can save money and stress.

If you know someone who is struggling with their memory, you may wonder if the problem is dementia. And you’ve probably heard that getting diagnosed early with dementia is better than being diagnosed later. The reasons include the fact that the medication that’s available works best in the early stages and you wouldn’t want to miss that window of opportunity.

If you are a loved one of this person, you may have noticed changes which you’re anxious about, but they’re even more anxious than you are. As a result of that the person affected may do everything in their power to conceal or deny the problem. It’s understandable.

If it’s your parents that are affected, you might find them forming a coalition and the one who has dementia is shielded by the other parent. This situation might only come to light after the death of one.  That’s when you realise that the one who has died has been covering up for years while the other slowly declined in their capacity to care for themselves. It’s as if they got dementia overnight, the day of the funeral.

This means that you’re in the situation of grieving for one parent while having to make some pretty rapid decisions about the other parent. And of course, it’s all made even more difficult if somehow you’ve forgotten to or failed to persuade them to grant you power-of-attorney. That means a lot of court processes before you’re able to make decisions on their behalf and in their interest.

A person with dementia really benefits from early diagnosis because they get to know their diagnosis at a point when they are still well and where they can still take a very active part in decisions about what’s happening next. People with dementia say there should be “nothing about me without me.” And they’re right. An early diagnosis allows you to start to make those decisions and also to put in place the lifestyle changes that will allow you to live as well as possible for as long as possible.

But what does a failure to diagnose mean for family members and how often does it happen? In July this year Care Englandmade a report on the current state of dementia diagnosis and care. It showed that in some cases the waiting times for memory clinics can exceed two years. Even if you get really good post diagnostic support that was two years during which you were unable to benefit from advice about settling your legal and financial affairs, and you were unable to talk to your family about what you want to happen next. Two years of missed benefits. For many people the diagnosis comes too late. And the diagnosis rate is about 60 to 70% which means 30 or 40% of people affected die without getting the diagnosis that would help them and their family to cope.

Some people choose to pay for a diagnosis from a neurology clinic, which looks like help. But it doesn’t offer the wraparound care that a person needs in the pre-diagnostic stage and the support for family carers after the diagnosis when the person starts to need extra care and the carer needs advice on how to provide that. That’s why this year I have joined with Health is One Brain Health and Dementia Pathways to start a new dementia diagnosis pathway. Some of my friends have been surprised because I do so much volunteer work for free. Why would I get involved in something where there is a charge? Well, it’s easy because it saves money for carers. Everything about dementia is expensive and it is less expensive for people who know early what they’re dealing with. When it comes to care homes or home care £2000 a week is not an unusual amount to pay. Anything that allows you to stay well and delay the need for paid for care must be worth this early investment. If you want to know more contact my colleague Juanita Green here