This article is an excerpt from a new book: Colours of Ageing – 30 years of research on the mental health of the Singapore elderly.
Last year, a professor from Indonesia sent me an e-mail. He asked: "When a doctor becomes more forgetful, what should we do?"
I have been asked this question several times. It is a touchy topic and doctors who were referred to the National University Hospital (NUH) Memory Clinic were often in a state of denial and would tell me: "It's just ageing." Their cognitive and behavioural changes were noticed by family members and colleagues. In one case, it was the junior surgical staff and nurses in the operation theatre who observed that the 55-year-old surgeon had difficulty with the names of various surgical instruments, and that he had appeared indecisive. However, he was still able to drive his car and his wife did not detect any memory lapses. When the same problem recurred, the chief nurse reported the matter to a senior surgeon, who then spoke to the doctor in private and suggested a referral to see a specialist.
Breaking bad news to a doctor can be awkward. In his book, Am I at Risk of Being Sued? A Guide to Medical Negligence Law, Dr Colin Tan, a judge at the Family Court, wrote: "A doctor's duty of care applies not just to the giving of medical treatment but also extends to the breaking of bad news to the patient... A doctor who causes psychological harm to a patient because of careless or callous communication could potentially be liable for the harm caused."1
Dementia is a diagnosis that has consequential legal and professional implications. Many specialists are cautious about the diagnosis, especially when the symptoms are early or mild and functionality is good. But it is the early phase of dementia that is more amenable to psycho-social interventions or medications to retard the deterioration.
I discussed this matter with Prof John Growdon, a neurologist from the Harvard Medical School, who was for many years in charge of the Alzheimer's disease research in the Massachusetts General Hospital in Boston. He believed that we should not hide the diagnosis and leave the patient in a quandary.
A diagnosis of dementia also has implications for the family and hospital or clinic where the doctor works. Because of the fear of stigma, there is often prolonged denial and hence, delay in seeking help. In the NUH Memory Clinic, we observe that the delay may be of six months to two years before the first consultation.
The Memory Clinic started in 19902 when the Department of Psychological Medicine was a member of the World Health Organization (WHO) team for the global study of dementia. The staff at the Memory Clinic included a psychiatrist, a geriatrician, a neurologist and a psychologist. Most of the doctors referred to the clinic retired at the median age of 74 years. However, there are a few in their late fifties. Our study shows that the life expectancy of dementia patients in Singapore is about ten to 12 years;3 six years in the mild phase, and about three years in moderate and severe phases. A few patients in our clinic survived another 16 to 20 years with good quality of life up till the late stages.
Handling the diagnosis
The question the Indonesian professor asked was not just about breaking bad news but also clinical responsibility and how it could be handled. At the recent Pacific-Rim College of Psychiatrists Scientific Meeting held from 3 to 5 November 2016 in Taiwan, I discussed this with a few professors from Australia and the US, who concurred that the doctor should know the diagnosis and be informed quickly. It is advisable to disclose the diagnosis to the doctor and family members, although a few specialists prefer to speak to the family members first. Research in our Memory Clinic indicated that about 56% of family caregivers had symptoms of anxiety and depression.4 In our experience, the doctor and family members are not discomfited by the message, especially when information is given to them clearly and frankly.
A/Prof Roy Joseph, chairman of the NUH Clinical Bioethics Committee, suggests the formation of a three-person hospital committee to help make decisions on clinical competency and recommendations. These three persons could include a geriatrician, psychiatrist, neurologist or psychologist. In some hospitals in Australia and the US, the heads of department or medical director would chair the committee. "Having a group reduces the risk of bias and brings about collective responsibility," A/Prof Joseph advises. Recommendations should balance the best interest of the doctor with that of the patients and the hospital.
Dementia is not a terminal illness and we should not advocate therapeutic nihilism. Like all patients with memory problems, the assessment must be thorough and it is important to discuss with the patient other legal matters like the Lasting Power of Attorney and even the making of a will. There are many psycho-social interventions that can be introduced to slow down the decline and improve the quality of life. A renowned Singapore doctor diagnosed with Alzheimer's disease had a good quality of life for many years because of his devoted and loving wife. She introduced to him music reminiscence, exercise and reality orientation therapy — he passed away after 16 years of the illness.
Coping with dementia
Dr Jennifer Bute, a British GP in her 50s, discussed her dementia diagnosis on a Radio 4 talk which was also reported in the Guardian. She shared that dementia was a challenge and not a death sentence: "I discovered when people found out I had dementia, they avoided me," she explained. "They don't know what to say."
Dr Bute decided to do something for herself and her family. She produced leaflets for her children and friends to help them cope. And when she realised that she couldn't find her way home, she bought a satnav to guide her — a practical approach for dementia patients and a reminder that life goes on for the person. She found Facebook useful as the short sentences and a picture of each person makes it easier to remember who they were. With a positive note and a sense of humour, she added, "You live with dementia, you don't suffer it."