Disclosure of Dementia Diagnosis and the Need for Advance Care Planning in Individuals With Alzheimer's Disease

To the Editor: In a recent article in the Journal of the American Geriatrics Society, Carpenter and colleagues found that disclosure of a dementia diagnosis does not prompt a catastrophic emotional reaction in most people with dementia—not even in those who are cognitively only mildly impaired.1 Companions of these patients also remained stable or even declined in their emotional stress immediately after the disclosure of dementia diagnosis. These findings suggest that physicians can provide a dementia diagnosis to a patient without fear of prompting strong emotional reactions. In our experience, the disclosure of a diagnosis of dementia and adjustment to understanding all dimensions related to this information are a long-term process in which the patient's feelings develop and change over time. We examined the experiences of spousal caregivers of patients with Alzheimer's disease (AD) with many comorbidities and disabilities regarding the disclosure of dementia diagnosis and the subsequent need for advance care planning (ACP). The study included a survey of a random sample of 1,943 caregivers of persons with AD in Finland. All of the persons with AD had a confirmed diagnosis and received a compensation for AD medication from the state. Of the 1,434 respondents, 1,214 identified themselves as their spouse's caregiver. The mean age of the caregivers was 78.2, and that of the spouses with dementia was 80.5. Of the caregivers, 63% were female. The couples had long-lasting marriages (mean 52 years).2 The mailed questionnaire included items on demographic characteristics and the physical and psychological symptoms and care needs of the persons with dementia. These questions and their validity have been described in detail elsewhere.2 The questions related to ACP had been used in previous interview studies in elderly people.3, 4 The ACP questions appear in Table 1. Of the caregivers, 90% reported that dementia had been disclosed openly to their spouse; 97% also preferred that physicians openly inform the patients of the dementia diagnosis, although more than half of their spouses with AD had developed depressive symptoms after the disclosure. Of the caregivers, two-thirds felt that their awareness of their spouse's dementia caused them grief or symptoms of depression.5 After the disclosure of a diagnosis, a large proportion of caregivers felt a need for discussion about ACP with their physician. Of the caregivers, 59% expressed that they would like to discuss ACP with their spouse's physician, although only 6% reported that they had discussions related to ACP with a physician. Of the caregivers, fewer than one-third reported that they had discussed their spouse's medical care preferences with each other, and only 4% of the spouses with dementia had a written living will (LW). The couples in which the spouse with AD had a LW were generally better prepared for the loss of autonomy than the others. This large epidemiological study of people with AD showed that physicians had openly disclosed their diagnosis to nearly all of the subjects, and depressive reactions over time were common in the patients with AD and their caregivers. Despite of this, almost all caregivers preferred open disclosure. The caregivers have a great need to discuss end-of-life concerns with a doctor, but for the most part these concerns had not been discussed with these families. When should these end-of life concerns be brought up with dementia patients and their families? The moment of the disclosure of dementia is perhaps not the right time to discuss end-of-life concerns with the patient, but later may be too late, because cognition declines and emotional ability may be charged with depression. The nature of the long-lasting illness calls for arrangements in which disclosure should not be a one-time event and must instead be an ongoing, dynamic supportive process and a fundamental part of the care of a patient with a dementia.6 Physicians should thus have the ability to communicate effectively with the patient and to discuss end-of-life care on an ongoing basis, taking the opportunity to gain the patient's confidence. To handle this task, physicians, as well as other caregiving personnel, should receive more education about communication skills and palliative care. Greater resources should also be allocated to ensure adequate time for discussions and for exploring psychological needs. The ACP process calls for institutions to actively coordinate better care across settings.7 These findings suggest that many physicians have disclosed dementia diagnosis openly to their patients but not talked with them about their future care needs or end-of-life wishes. There is also a great need to discuss ACP with spousal caregivers of patients with dementia. It is one way to support them in their grief and distress. Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this letter. This study was financially supported by the Finnish Social Insurance Institution and the Päivikki and Sakari Sohlberg Foundation. We also acknowledge the support of the Central Union for the Welfare of the Aged and Finland's Slot Machine Association.