Navigating the system without losing the will to live – part 2

Small disclaimer – Please note – a lot of what is written in this post is repeated elsewhere in the blog so if you are after pithy insights, witty asides or enlightenment regarding dementia care you may be disappointed (as indeed you may have been by previous posts).  What follows is specifically aimed at those who have ‘hit the wall’ in terms of getting a diagnosis.

I have just stumbled across a letter I wrote to the psychiatrist who saw mum privately (after the NHS memory clinic told us that mum simply had ‘low self confidence’ – Genius).  In addition, a recent post on the Alzheimer’s Society forum Talking Point (very, very helpful for all sorts of odd questions you may want answering) referred to the difficulties in getting a diagnosis and I thought that it may help to share this letter.  I know from a professional point of view that it is useful to have information prior to seeing a patient and I certainly know from a carer’s perspective how frustrating it is to have seen a specialist and to come away thinking ‘Bugger – I forgot to tell him about xxx’.  A letter is an excellent way of ensuring that the specialist you are seeing (in this case paying through the nose to see) has the full story before – and after – your consultation.  I would urge anyone out there who is currently struggling to get a diagnosis or trying to understand aspects of their management, either NHS or privately, to make a note of their questions and key concerns and to ensure that once documented, they are seen by the relevant person.  It saves everyone a lot of time and energy (although please don’t be like one of my patients who has an entire lever-arch folder dedicated to his piles – crammed full of information leaflets, appointment letters and Daily Mail articles which he brings into every consultation and discusses at length – keep it brief).

Top tips:

  • Brevity – less than two pages or you will lose the salient points.
  • Clarity – be clear about what you want the professional to know AND what you feel you may be unable to say in front of your loved one (usually the patient, unless you’re in love with the doctor which may prove difficult).
  • Context – document what the patient was like previously compared to how they are now so that the specialist understands the change.  They may assume that your parent always wore outlandish garments or remained mute during conversation.  Beware though – keep it brief.
  • Addressee – You may know the name of the assessing psychiatrist or psychologist but if not send your letter to the Memory Clinic you have been referred to.  Your GP’s secretary will have the address or you can look it up on your local NHS website.  If you are not sure who to write to (e.g. if you are stuck between services) speak to your GP regarding a second opinion.  You may need to go privately.  This is not a recommendation but simply a recognition that current services are over-stretched and underfunded (much more ranting about this later I expect).  Usually, once you have your diagnosis you can go back into the NHS system and you may feel that it is worth spending the money on an initial private consultation to get to this point earlier (as with most things, going privately does not mean you get better care, nearly all doctors working in private healthcare have NHS contracts too, but you do get to jump the queue).  If you cannot afford to go privately ask your GP to refer you back to the original team and explain that the clinical situation has changed.  You may wish to be referred out of area but be aware that this could result in having to travel a distance for the assessment and it may be difficult to transfer care back to your local area once diagnosed.  Apologies – this top tip has turned into an essay.

Here is the main content of my letter:

“The situation is such that I felt it best to write to you in advance in order to give you as much information as possible. I am assuming that you have a copy of mum’s referral letter and will therefore be aware of the difficulties she has been having. The situation is however, slightly more complicated and has in my opinion deteriorated at a rate that may not initially be apparent. My father is keen to protect mum’s feelings and may not be able to convey the severity of her symptoms to you whilst in her presence – indeed, it is often only after very detailed questioning that he reveals anything to me, I think he hopes that “things will just get better”. The basic problems are as follows:

1 – Speech – Mum’s verbal fluency has deteriorated dramatically and in the past few years she has gone from being an articulate, chatty, gossipy person, to being barely able to string a sentence together. She struggles over at least one word in every sentence and is unable to relate an anecdote or story without considerable prompting – this is worse in large social gatherings but is also a problem in one to one conversations with close family so the idea that it is to do with “low confidence” (which has been suggested by some in the past) seems erroneous. It is often noticeable that family and friends now routinely finish her sentences to help her or just quicken up a conversation.

2 – Basic skills – Mum cannot extrapolate information and apply it to new situations. Dad said that while they were on holiday recently he had to teach her how to operate the shower in each different hotel. Once learnt she could manage but she had no idea where to begin initially. Similarly I have seen her struggle to operate her mobile phone, locate her credit cards in her purse and even forget how to put keys in the ignition to start her car. She no longer cleans, cooks or irons to any significant extent. She was the kind of person who would have been mortified to have overcooked a dish or for someone to see the house at anything less than it’s very best and yet now if she burns a cake or things are untidy she is completely relaxed about it. Equally, she was terribly sensitive to other people’s feelings and would worry about any perceived social awkwardness whereas now she causes offence by not listening to people or appearing disinterested – whilst this laid back attitude has its benefits (certainly making family life less stressful and tense) it is nonetheless a significant and dramatic change in her personality. She exhibits a general inertia about even the most routine of tasks and appears to lack any motivation.

It will be obvious from this letter that my key concern is early-onset dementia. I cannot see any other explanation for her symptoms and whilst I am loathe to push for a diagnosis I feel we are currently doing her, and my father, a disservice by pretending everything is normal and that “she’s just a bit depressed and anxious”. I cannot see that depression, even in a severe form, could account for many of her symptoms, and to me she doesn’t seem depressed or anxious at all – in fact, her lack of concern and worry about the current medical consultations is in itself an odd reaction and totally out of character.”

Remember – the clinical team want to diagnose people promptly and appropriately.  They are skilled at what they do but are often constrained by the limits of the system.  Basically, try not to lose your rag with them.

2 thoughts on “Navigating the system without losing the will to live – part 2

  1. I’m impressed with your energy!. My mum has dementia and we keep getting pushed gently out by our wonderfully caring dad who will do anything not to upset mum. Latest is they cancelled prossiona,l not medical but personal and companionship, care because mum cries about the implication that she can’t cope. We don’t live nearby we being my 3 siblings and I and they are in their early nineties…. They are mostly wonderful when we’re around but are deeply mistrustful of unknown quantities.

    Anyway. Love your writing thanks. Feel I need to change gear and rev up but not sure where to in terms of keeping them safe and happy at home. Just read Contented Dementia. Judith

    Liked by 1 person

    1. Thanks Judith! Lovely to hear from you. I know what you mean about the conflict between keeping people safe but also allowing them to continue to enjoy and experience life. Have you read my post about our recent holiday (“How much fun is someone with dementia allowed to have?”) which goes into this in a bit more detail? Things may be a little different with you if your parents are in their nineties – the hardest thing for me is knowing that mum is young and therefore should be doing all sorts of things that she can’t do. A lot of it needs to be led by what people want rather than what we think they need but it’s not easy to separate the two!


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