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Awareness about dementia is not just public ignorance: it’s also critical to living with dementia
Often I’m struck about how the ‘awareness’ focus in dementia is making people in general public simply knowledgeable that dementia exists in 800,000 people in the UK.
But awareness about symptoms in persons living with dementia themselves is also a critical component, and cannot be factored out of the debate in current policy drive to identify the missing people undiagnosed dementia.
Policy wonks without a scientific or clinical training in dementia have become very adept at blaming GPs for underdiagnosis of dementia, but people who have some knowledge of this specialist field know that the situation is far more complicated. Other issues include perhaps a reluctance of people to seek a diagnosis because of the life-changing impact that such a diagnosis might make. There may also be nuances between different ethnic or social groups in society which might act as ‘barriers to diagnosis’. Also, some persons with dementia may be genuinely unaware of the extent of their own symptoms.
To be fair, it’s impossible for anyone who doesn’t have a diagnosis of a dementia to understand completely what living with dementia really means. Norman McNamara, who was diagnosed with dementia a few years ago at the age of fifty comments: “What can be worse than having dementia?” “It’s knowing you have dementia – it’s like having two diseases, having it, and knowing you have it.”
This is a helpful description of ‘insight’, that people with dementia can have into their own conditions. In this video, Norman reports symptoms which he knows are getting worse, and which knows are visibly getting worse to his wife, Elaine. Patients with neurological disorders are often partially or completely unaware of the deficits caused by their disease. This impairment is referred to as “anosognosia”, and it is very common in neurodegenerative disease, particularly in frontotemporal dementia.
The mechanisms underlying this phenomenon are generally poorly understood. It’s likely, however, memory for facts and events likely plays an important role. In addition, the frontal lobe systems are important for intact self-awareness, but the most relevant frontal functions have not been identified. Motivation required to engage in self-monitoring and emotional activation marking errors as significant are often-overlooked aspects of performance monitoring that may underlie anosognosia in some patients.
Another common type of dementia is a behavioral variant frontotemporal dementia (bvFTD), characterised by a slow change in personality and behaviour, is often unnoticed by the individual himself or herself. Loss of insight is a prominent clinical manifestation of this condition, but its characteristics are poorly understood. Indeed, Mario Mendez and Jill Shapira reported in 2005 some research into what appeared to cause this lack of insight in this particular condition. They found that it is associated with low blood flows in the right hemisphere, particularly the frontal lobe, the part of the brain near the front of the head.
For the most common type of dementia, the dementia of the Alzheimer type, the generally widely-held belief is that persons experience a progressive loss of insight as the severity of dementia increases. People with this type of dementia can get particularly forgetful. Most people aren’t fully aware of their impaired abilities, which doctors describe as a “lack of insight”. This can put them at risk of injury from unsafe actions and also make them less willing to seek and comply with treatment.
However, understanding a person’s level of insight can help doctors and carers better manage their treatment and daily needs, but gauging insight can be difficult. The usual approach is to ask patients questions about their current abilities and compare their answers with those from an ‘informant’, which is usually a family member or someone else close to the patient.
But this method isn’t ideal, as it relies on the informant’s opinion of the patient’s abilities, which can be swayed by factors such as how well they know the patient and how distressing they find their behaviour.
Norman often states that ‘once you’ve met one person with dementia, you’ve met one person with dementia’. This means that for any one person with dementia there’ll be different extents of symptoms of illness, different extents of abilities, different levels of insight, and therefore different perceptions of ‘living well with dementia’. So, it is arguably difficult to compare whether one type of dementia is ‘worse’ than other?
It was honour to speak to a group of suspended Doctors on the Practitioner Health Programme this morning about recovery
It was a real honour and privilege to be invited to give a talk to a group of medical Doctors who were currently suspended on the GMC Medical Register this morning (in confidence). I gave a talk for about thirty minutes, and took questions afterwards. I have enormous affection for the medical profession in fact, having obtained a First at Cambridge in 1996, and also produced a seminal paper in dementia published in a leading journal as part of my Ph.D. there. I have had nothing to do with the medical profession for several years now, apart from volunteering part-time for two medical charities in London which I no longer do.
I currently think patient safety is paramount, and Doctors with addiction problems often do not realise the effect the negative impact of their addiction on their performance. No regulatory authority can do ‘outreach’, otherwise it would be there forever, in the same way that Alcoholics Anonymous or Narcotics Anonymous do not actively go out looking for people with addiction problems. I personally have doubts about the notion of a ‘high functioning addict’, as the addict is virtually oblivious to all the distress and débris caused by their addiction; the impact on others is much worse than on the individual himself, who can lack insight and can be in denial. Insight is something that is best for others to judge.
However, I have now been in recovery for 72 months, with things having come to a head when I was admitted in August 2007 having had an epileptic seizure and asystolic cardiac arrest. Having woken up on the top floor of the Royal Free Hospital in pitch darkness, I had to cope with recovery from alcoholism (I have never been addicted to any other drugs), and newly-acquired physical disability. I in fact could neither walk nor talk. Nonetheless, I am happy as I live with my mum in Primrose Hill, have never had any regular salaried employment since my coma in the summer of 2007, received scholarships to do my MBA and legal training (otherwise my life would have become totally unsustainable financially apart from my disability living allowance which I use for my mobility and living). I am also very proud to have completed my Master of Law with a commendation in January 2011. My greatest achievement of all has been sustaining my recovery, and my talk went very well this morning.
The message I wished to impart that personal health and recovery is much more important than temporary abstinence, ‘getting the certificate’ and carrying on with your career if you have a genuine problem. People in any discipline will often not seek help for addiction, as they worry about their training record. Some will even not enlist with a G.P., in case the GP reports them to a regulatory authority. I discussed how I had a brilliant doctor-patient relationship with my own G.P. and how the support from the Solicitors Regulation Authority (who allowed me unconditionally to do the Legal Practice Course after an extensive due diligence) had been vital, but I also fielded questions on the potential impact of stigma of stigma in the regulatory process as a barrier-to-recovery.
I gave an extensive list of my own ‘support network’, which included my own G.P., psychiatrist, my mum, other family and friends, the Practitioner Health Programme, and ‘After Care’ at my local hospital.
The Practitioner Health Programme, supported by the General Medical Council, describes itself as follows:
The Practitioner Health Programme is a free, confidential service for doctors and dentists living in London who have mental or physical health concerns and/or addiction problems.
Any medical or dental practitioner can use the service, where they have
• A mental health or addiction concern (at any level of severity) and/or
• A physical health concern (where that concern may impact on the practitioner’s performance.)
I was asked which of these had helped me the most, which I thought was a very good question. I said that it was not necessarily the case that a bigger network was necessarily better, but it did need individuals to be open and truthful with you if things began to go wrong. It gave me a chance to outline the fundamental conundrum of recovery; it’s impossible to go into recovery on your own (for many this will mean going to A.A. or other meetings, and discussing recovery with close friends), but likewise the only person who can help you is yourself (no number of expensive ‘rehabs’ will on their own provide you with the ‘cure’.) This is of course a lifelong battle for me, and whilst I am very happy now as things have moved on for me, I hope I may at last help others who need help in a non-professional capacity.
Best wishes, Shibley
My talk [ edited ]
