You’re a poet and didn’t know it… Cause you have Alzheimer
Fewer than 50% of people who are diagnosed with Alzheimer’s disease are actually told about their diagnosis, according to the Alzheimer’s Association. Doctors tend to leave out this tidbit because they don’t want to distress the patient, but they’re actually doing them a disservice. First of all, “there are lots of other fatal diseases a doctor give diagnoses for,” as vice president of constituent services for the Alzheimer's Association Beth Kallmyer put it. Moreover, the patient’s family is left with less time to make financial plans and establish a caregiving team. Regarding that, the report also highlighted the financial toll of the condition – approximately $218 billion for the 85% of patient relatives who provide unpaid caregiving duties. The direct cost of Alzheimer is expected to reach $226 billion this year, in terms of medical, hospice, and long-term care.
In addition to doctors not wanting to be the bearers of bad news – and if that’s the case, they might want to revise their career choice – they may also lack the time and/or the training to provide a diagnosis. “Primary care doctors have very, very limited time to spend with patients. And to assess someone with brain failure, you need a substantial bit of time,” geriatric psychiatrist and director of Banner Alzheimer’s Institute Pierre Tariot said. “Everybody understands that doctors are under enormous pressure to do a lot in a short period of time, and talking about Alzheimer's disease takes time,” Kallmyer added. Doctors were found more likely to offer a diagnosis in the later stages of the disease.
However, as Kallmyer explained, “in the early stages, people can still talk to family members about what type of care they want. And they can participate in clinical trials. If doctors don’t give people the diagnosis, they are robbing people of the opportunity of making those decisions. They don’t have a right to do that.” Furthermore, that many patients reported being told about their condition later in the progression of the disease proves they didn’t forget being diagnosed because of the very nature of Alzheimer. “You’re experiencing [the symptoms] whether you are told the diagnosis or not,” director of scientific programs and outreach for medical and scientific relations at the Alzheimer's Association Keith Fargo said. “Now you can put a name on it, now you can plan for your long-term care, now you can make your legal and financial planning, and put together a care team. … There are lots of benefits to learning your diagnosis. Patients have a right to know.”
Alzheimer’s disease’s disclosure rate of 45% is dwarfed by that of breast, colon, rectum, lung, and prostate cancers (93%). Ironically, cancer once had the stigma that is now associated with dementia. “These disturbingly low disclosure rates in Alzheimer's disease are reminiscent of rates seen for cancer in the 1950s and '60s, when even mention of the word 'cancer' was taboo.” In fact, the report cited a survey from 1961 which revealed that 90% of doctors refuse to tell patients they had cancer – because that disease was deemed incurable, they were afraid the revelation would deprive patients of hope. “I think part of it has to do with, back in the day, if someone was given the diagnosis of Alzheimer’s disease, it was the social kiss of death, because the impression was, there was nothing to do,” Tariot said. “And people are terribly afraid of a disease that robs you of your identity. They tend to look away.”
Doctors are not legally obligated to tell patients that they have Alzheimer’s disease. But “how is it OK that someone is going into their doctor's office and not getting a diagnosis for a fatal, progressive disease?” Kallmyer asked. When the data excluded information shared with caregivers, the disclosure rate dropped to 33%, which is unfortunate because a caregiver is a perfect middleman between the doctor and the patient, especially if they heed the following tips.
Tips for telling a person they have Alzheimer’s disease
- Strength in numbers. One way of telling an Alzheimer patient of their diagnosis is with a family conference including the patient, relatives and loved ones, other caregivers, and professionals – and not just physicians; a social worker with experience with cognitively impaired patients can prove quite helpful.
- Sensitivity. The authors of the report pointed out that the patient may not understand the diagnosis or be able to cope with it. Caregivers must be ready for the patient to react with denial. In such case it might be best to be sensitive to the individual’s reaction and not enter into a more detailed explanation of Alzheimer’s disease.
- Reassurance. Tell the person that you will be there for them at all times.
- Follow up. Revisit the symptoms and the need for care whenever needed along the way.
- Euphemize. The fact remains that Alzheimer’s disease is a distressing diagnosis and that the patient is likely to forget about it – and thus relive the shock and trauma each time they are reminded. Instead of holding out on them, try to use euphemisms like ‘memory loss.’
- Talk to the patient like an adult. Be willing to discuss Alzheimer’s disease with the patient and how it’s going to affect their lives, and do not dismiss the person’s emotions – it’s natural for them to feel angry, frustrated or disappointed.