Delayed diagnosis of dementia

A delayed diagnosis of dementia can reduce choices and shared opportunities with loved ones for many people, and can have a number of significant and negative outcomes.

  • Rate of the disease may progress more quickly as reduced ability to participate in healthy lifestyle, non pharmacological and positive psychosocial interventions
  • The person with dementia may no longer have legal capacity to make decisions in their own interests
  • Decreased willingness or ability to participate in social or other activities
  • Reduced ability to accept they have dementia and come to terms with it
  • Impaired ability to go through a healthy grieving process
  • Impaired ability to share end of life decisions with their family
  • Impaired ability to make financial decisions
  • Appointing people to make decisions in their best interest may be impaired
  • There may be a conflict of interest between the person with dementia and the person who will end up having to take over their affairs
  • Accepting decisions such as the loss of their driving license more difficult
  • If medication is available for the type of dementia they are diagnosed with, they might have missed out on the opportunity of improved quality of life this can give them
  • Drugs trials may no longer be available to them because of the stage they have entered
  • Family members will lose the opportunity to fully share in the diagnosis, and grieve with their loved one
  • Person with dementia more at risk of physical injury
  • Person with dementia more at risk of wandering and getting lost as safety systems not in place
  • Driving may become very dangerous, therefore impact to own and others safety
  • Insurance policies may be null and void if diagnosis is discovered to have been delayed, and an accident takes place
  • Personal growth that could have been achieved through self awareness of the disease impaired by late diagnosis
  • Ability to self -advocate, and for socialisation and community involvement impaired
  • Increased isolation
  • Increased loneliness
  • Increased problems with general health
  • Increased visit to the GP because of the ‘masking’ of dementia symptoms, with obvious cost implications to governments
  • Increased levels of depression, anxiety, anger, and behaviour management requirements
  • Increased costs of care[1]

Finally, following on from this list, and my blog yesterday, an early diagnosis of dementia could well reduce stigma and increase awareness about dementia, as the community would see more people living well in their communities, in spite of dementia, rather than just seeing people at later stages with high levels of impairment. In my own experience, I sometimes wish I had not been diagnosed so early as the level of disbelief in the community that I have dementia is often a burden, and I have wondered, like Richard Taylor if the devastation and fear caused by things like the stigma might have been prevented with a delayed diagnosis. I used to agree with him, but these days do feel the best chance of coming to grips with the ‘psychological tornado of fears driven by irrational beliefs’ is to find out earlier into the disease.  However, I’m not sure I agree with early diagnosis, or in fact, even a diagnosis after the age of about 80, as feel it may hinder rather than help the elderly, and perhaps just being encouraged to manage the various ‘disabilities of aging’, might be more useful.


[1] World Alzheimer’s Report, 2011, Executive Summary, p 3.

15 thoughts on “Delayed diagnosis of dementia

  1. I am sorry to be entering this interesting debate so late: but I think it is necessary to first point out that all people are individuals and whereas one person may benefit from early diagnosis another may definitely not. Should we not assess the helpfulness of such a spurious diagnosis for each individual and give them the choice of having a name for the condition or not. Also we have to come to some recognition that often when we are diagnosed with a condition such as dementia we begin to focus on the things we can’t do, and lose perspective on the importance of the things we are still able to do. For example, things which in my opinion are far more important than mild-moderate memory or language impairment such as the ability to listen, to hug, to love, to empathise etc… Also many of the points for early diagnosis are about capacity, and I do not think it is necessary to have a diagnosis for these things to be discussed and planned for. It is something all of us should organise as we age. Another important area to highlight is the statistics. For example a study by Herbert et al (2003) found that Alzheimer’s diagnoses in USA can be broken down as such:
    4% are under 65 years old
    6% are between 65-75
    44% are between 75-85
    46% are 85 and over
    Now stats vary across the world but they generally follow the same trend. But when thinking about the benefits of early diagnosis we need to keep this in mind and ask whether it is of benefit for those 80+ because after all these are the vast majority – again I suggest this is an individual thing, but to be more controversial I think the greatest thing we can do is accept our mortality and start to plan for degeneration and death and for that we do not need a label/diagnoses.

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    • Hi David,

      Thanks for joining the discussion, always good to hear from you, and better late than not at all.

      Like you I had felt diagnosis over 85 was pointless, in fact I felt even younger, but was shown there may be some value in it last week by an older age psychiatrist I met at a dementia forum. He said in his practice and experience, only 12% of people over 80 have any type of dementia, and that 4 out of 5 people are often ‘healed’ of other issues in the process of discovery towards a diagnosis, for example interacting medications or even simple things like infections’s causing memory loss or cognitive deficits, etc. I have some more research to do now!!

      And, yes, it is a personal choice wanting a ‘diagnosis’ of anything, but especially one of dementia. Most of my older family friends find that particular diagnosis the most horrific one to even contemplate! Hugs, expressions of love, empathy, compassion and living an engaged and positively meaningful life is very important too.

      I fully agree with you that accepting our mortality is so important, and talking about death, and and the losses we might incur on the way, including memory loss and cognitive difficulties, is so important to our continual healing of ‘life’ issues. I had even bought the lease on my own ‘plot’ when I was 18 years old, but gave it away a few years ago (under pressure). See my blog ‘Losing the Plot’!! It might give you a laugh, and Peter says will definitely show you I’ve had dementia all of my life.

      Take care, and keep on thinking.
      Kate

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      • Hi,

        I want to preface this by saying that I haven’t had to make this decision, but I think it’s an excellent point that getting an early diagnosis for dementia, or even any diagnosis at all, is a deeply personal choice. I’m interested in the idea because I’d long taken for granted the notion that “knowledge is power” and assumed people would rather know than not know.

        I was incorrect.

        A recent New York Times story, “How Do You Live Knowing You Might Have an Alzheimer’s Gene?”, really rubbed me the wrong way on this topic. But at the same time it opened my eyes to some of the reasons that people may not want to know.

        I feel that, on at least one level, it is best for our society if people find out early: I think it’s the surest way to dissipate some of the stigma and fear surrounding dementia. But I think I forgot that most individuals make decisions for themselves without “what’s best for society” being much of a factor.

        All of that said, I have both dementia and heart disease in my family history and I’m interested in knowing my likelihood of “getting” either of them. For me, personally, knowledge really feels like power, even when there’s no “cure.”

        Thank you for all you share,
        Jennie Lynn

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      • Yes, it is such a personal choice. I like knowledge as it empowers me, but I know many others who feel the opposite, especially if the kowledge is about something like having dementia. 🙂

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  2. Actually the more I think about this, the less I think early diagnosis of dementia is a good idea.
    If (When) it is me – I am staying away from those B@#$% Doctors!
    Why? Because they will tell me I have dementia, which they can’t cure or do anything much about.
    BUT they will also start telling me what I can’t do – like drive, live independently, work…heaps of stuff!
    I am thinking of my neighbours, who, in retrospect, live happily next door for about ten years with dementia. I don’t think anybody ever diagnosed it. As they became less able to cope, everyone pitched in – checked up on them, brought them home when lost, organised meals on wheels, washed their sheets occasionally. He spent only the last week of his life in hospital, and she spent one hateful year in a nursing home after that. What if they had been “diagnosed”? I’ll bet it would have been straight off to a home, and they would have been very unhappy.
    Nope, I am not going to ask the Doc. 🙂
    xx

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    • Hmmm, maybe ‘never say never’ Sally? What you say is exactly my point about not thinking diagnosis at an older age is worthwhile as it would probably be more productive to just help your family, friends or neighbours live as well as they can, as you did with your neighbours. I suspect if you are younger and start to worry about severe symptoms of dementia, you might just decide you do want a formal diagnosis. So often, knowledge is empowering, and it does allow you to plan for yor own future. Today I heard from many others about differrent reasons to value an early diagnosis, and if I can ever make sense of my notes, I’ll add them here. So often one never really knows about how they would respond to something, until it actually happens to them. xx

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  3. An interesting dilemma – to know or not to know? Which would you rather? Richard’s point about the dubious value of early diagnosis in the face of no real effective treatment is a good one, but it is offset by your points to do with preparedness.

    In any case since dementia is a clinical diagnosis made over time, and is not necessarily related to “hard” findings on eg MRI etc (you can have big changes on MRI but no symptoms, and vice versa), one could argue that a “label” that explains distressing symptoms is at least an “answer” that enables one to move on.

    So, in conclusion, I would say that once clinical symptoms appear, that is the time to make a “label” (ie diagnosis), avoiding “tests” that have dubious value and will not change management/treatment until they can be used to confirm a clinical diagnosis.

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    • Actually this reminds me of a letter in The Australian today, in this case warning of the pitfalls in the proposed “Health Checks” for three year olds. The writer reminded us of Foucault’s work “The Birth of the Clinic” . In general, Foucault argues against the medicalisation of society, proposing that our liberty is threatened due to the “invention” of mental, and indeed many other types of “illness”. Of course, Foucault’s views are extreme, but I think he should be required reading for anyone in the medical profession, to remind us that labels (“diagnoses”) can be dangerous as well as helpful.

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  4. Early diagnosis is imperative if we are to give people living with dementia the opportunity to stay engaged and pursue there life. Doctors who don’t diagnose are robbing these people of the opportunity live their life the way they would like.

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  5. I think and not from experience that there is NEVER a good time for the diagnosis of dementia, as you are correct the stigma around it does nothing to help the sufferer nor the families. Is there a preparation for this disease, like cancer it is always a shock to find out.

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