Patient Participation in Medical and Social Decisions in Alzheimer's Disease

Johannes Hamann, MD; Katharina Bronner; Julia Margull; Rosmarie Mendel, PhD; Janine Diehl-Schmid, MD; Markus Bühner, PhD; Reinhold Klein, MD; Antonius Schneider, MD; Alexander Kurz, MD; Robert Perneczky, MD


J Am Geriatr Soc. 2011;59(11):2045-2052. 

In This Article


Participation preferences of patients were relatively high, with special emphasis on social decisions. Overall, patients wanted their relatives to play a secondary role only. Relatives and physicians gave poor estimates of patient participation preferences, and relatives wanted to attribute less power to patients than the patients themselves. Patients refrained from participation if they had lower MMSE scores or were unsure about their decisional capacity. Even in this sample with rather minor cognitive impairment, there were deficits in decision-making capacity that mostly related to the understanding section of the MacCAT. There was only a weak correlation between the different measures of the patients' decisional capacity. The largest overlap was found between the relatives' ratings and the MacCAT ratings. Physicians' ratings correlated less with MacCAT ratings, and patient self-ratings did not correlate with any other measure.


Patients were recruited at a university-based, specialized memory clinic, so the results may not completely represent the population with AD. Patients with aMCI and mild dementia in AD were pooled to increase the range of cognitive deficits. Although aMCI is often a predementia stage of AD, and patients were included only if their relatives corroborated their cognitive complaints, this recruitment strategy might have led to the inclusion of some patients with causes of cognitive impairment other than AD. This might pose a relevant problem for a diagnostic study, although the main aim was to explore the associations between decisional capacity and decisional preferences in individuals with cognitive problems; the potential bias that the inclusion of patients with non-AD causes for cognitive deterioration introduced would therefore be small. As such, the lack of histopathological verification of clinical diagnoses is probably a minor concern, especially because the validity of the NINCDS/ADRDA criteria for probable AD, when compared with autopsy diagnoses, has been reported to be very good in study cohorts recruited at specialized centers.[21] The MacCAT ratings were done for one hypothetical decision only. Because of the nature of decisional capacity, deficits might be more or less expressed depending on the decision topic. Thus, patients might perform better or worse in other decisional situations. Finally, the inclusion of a control group with healthy, age-matched subjects would have enabled details of patients' limited decisional capacity to be examined more clearly.

The present survey was conducted because of the importance of engaging patients with early AD in medical and social decisions. There had been little evidence regarding the participation preferences of this population and their correlation with patients' decisional capacity.

The results regarding the extent of patient participation preferences showed two important results. First, patients with mild cognitive deficits and dementia had participation preferences (according to their scores in the API) similar to those of individuals with other somatic or psychiatric diseases.[13] Second, patients had clear preferences about who should have the greatest say in different kinds of decisions. For medical decisions, patients preferred that physicians make decisions for them, and for the two social decisions (car driving, nursing home), most patients wanted to decide for themselves.

Overall, patients wanted their relatives to have little power. Patients in earlier disease stages probably feel that they are still competent enough to make decisions themselves, unless decisions are explicitly medical, which their physicians should then make.

Whether patients with early AD are aware of their cognitive deficits and refrain from decision-making when their disease progresses cannot be answered based on this cross-sectional study, but the findings shed some light on this issue. Patient confidence in their decision-making capability and their MMSE scores could predict their participation preferences to some extent. Patients who felt less competent or who were rated as more severely impaired had weaker participation preferences. This finding goes along with previous reports in AD that have shown that patient involvement declines with disease progression.[4] In addition, this finding is consistent with results from a study on participation preferences of individuals with schizophrenia, who also express less-pronounced participation preferences when they are unsure about their own decision-making competences.[22]

Because insight often decreases with progressing disease, this correlation might not be present in later stages of AD. In addition, the validity of patient self-rating of their decisional capacity is questionable (see below).

Overall, patients' relatives and physicians had some difficulties predicting their patients' participation preferences. In addition, relatives wanted patients to play less of a role than the patients wished. This finding might reflect some disagreements, especially for social decisions (e.g., whether a patient is still capable of driving a car). Whether these disagreements are based on more-realistic estimates of the relatives than the patients (e.g., with regard to the patients' actual impairments) or on paternalistic attitudes of the relatives cannot be answered with these data.

Regarding patients' decisional capacity, which was assessed using the MacCat-T for a hypothetical decision scenario (complex decision about a new treatment, vaccination against AD), despite the rather mild cognitive deficits, some impairment was already present. If previously proposed cut-offs[23,24] are modified to these materials and applied to the current data (impairment defined as understanding scores ≤ 2.6, reasoning scores ≤ 3, or appreciation and expressing a choice scores = 0), 90% of the patients were impaired because of poor understanding, 7% poor appreciation, 20% deficits in reasoning, and 6% difficulties in expressing a choice. These numbers are surprisingly high but might be considerably lower if patients received more assistance in processing information, making notes, getting summaries and the like.

Decisional capacity also depends on the topic on which to decide and might have therefore been better for matters in which the patients were more experienced than with experimental drug treatment (e.g., social issues).

The question of rating patients' decisional capacity has been shown to be a challenge. The results of the current study show that patient self-ratings did not correlate with any other measure of decisional capacity, suggesting that self-confidence of cognitively impaired subjects may not be a valid measure. The pattern is a bit different for relatives and physicians, who at least to some extent show some kind of "interrater agreement" with each other and with the judgments of the MacCat-T raters. Relatives showed more overlap with MacCAT ratings than physicians.

Implications for Clinical Practice

For the physicians in charge of patients with MCI or mild AD, it is vital to know that these patients have marked participation preferences, especially when it comes to social decisions. Because social decisions are often more important than medical decisions in the early clinical stages of AD, physicians and relatives must not overrule patient interest in these decisions. Although it might be easier in some cases if doctors and relatives agreed with each other and started implementing certain measures (e.g., medication, home care), it is vital (for ethical but also for pragmatic reasons) to engage patients actively as early as possible in these decisions.

Impaired decisional capacity, mostly related to the recall of information and already present in early clinical stages, restricts involvement of patients with cognitive deficits in social and medical decisions. Thus, patients who may often neglect these deficits have to be aided in their processing of the information. In other circumstances (patients with schizophrenia), patients' decisional capacity can be enhanced considerably when patients are appropriately prepared,[25] and there is new evidence that the performance on the MacCAT of individuals with AD can be significantly improved when they receive special memory aids.[26]


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