Question: My husband with Alzheimer’s Disease sits in a chair all day and stares out the window. Is he depressed?
Answer: Possibly, but more likely he is displaying symptoms of apathy.
Apathetic behaviours are generally characterized by a lack of motivation and indifference. To the caregiver, the person with dementia and apathy can appear as showing less or no interest in previously enjoyed activities, lack of motivation to initiate activities (including self-care), lack of ability to persist with activities, withdrawal from social activities, and showing less emotional responses to daily events.
Normal, but still challenging
Apathetic behaviours are the most common “neuropsychiatric symptoms” associated with dementia, and occur in up to 90% of people with dementia at some point in their illness. These behaviours can cause significant stress for the caregiver, as these patients often require extra time and effort to provide care for. Even when a patient still retains the cognitive abilities to do self-care activities like bathing, dressing, grooming etc., they may not engage in these activities because of apathy. Apathetic behaviours can also be mistaken for other neuropsychiatric symptoms like depression or resistiveness to care, which require different forms of treatment.
Apathy has only recently become a focus of research. In fact, it was less than 10 years ago, that diagnostic criteria for apathy in Alzheimer’s disease and other dementias were first proposed. These criteria describe apathy as a loss or diminished motivation compared to the patient’s previous level of function, with the presence of symptoms in the following areas:
- Goal-directed behaviours (e.g. starting and/or participating in conversations, doing activities of daily living, seeking social activities etc.),
- Cognitive activities (e.g. loss of interest in news, personal, community or family affairs etc.),
- Emotions (e.g. diminished or absent emotional responses to positive or negative events etc.).
These criteria have been used in a growing body of research studies which suggest that apathetic behaviours have a biological basis and arise from changes in brain chemicals and brain function as a result of the damage caused by the dementia.
But is it depression?
Apathy is frequently confused with depression. Many patients with depression will also display apathetic behaviours, but most dementia patients with apathy will not have other symptoms of depression such as sad mood, hopelessness, guilt, and suicidal thoughts. It is important for the doctor to distinguish apathy from depression, as many antidepressants will be ineffective for the treatment of apathy, and some may even worsen symptoms.
The good news is that apathy is potentially treatable. Treatment begins by attempting to enrich the environment and daily activities of the person with dementia. I generally prescribe “gentle nagging” for the caregiver, stopping short if the patient becomes agitated. Attempting to engage them in a variety of activities they previously enjoyed (keeping in mind diminished cognitive capacity) is key. At times, the patient may respond better to non-family caregivers when it comes to initiating and participating in activities. Attending community-based day programs is a great way to engage patients in a variety of social, cognitive and physical activities. I often recommend hiring a personal trainer to develop an exercise program, and then allowing the trainer to initiate and monitor the program, acting as the external motivating factor for the patient. Providing positive feedback and “rewards” for engaging in activities can often help to ensure sustainability of benefits. All these types of suggestions are readily accessible to caregivers from the Alzheimer’s Society education and support groups.
Medications may provide some benefits for apathy. The most commonly used Alzheimer’s medications, the cholinesterase inhibitors (e.g. donepezil, galantamine, and rivastigmine) have small but definite benefits for apathy. It is not uncommon for me to hear from caregivers, that patients started on these medications appear brighter, more engaging and more likely to initiate activities. Unfortunately, some patients will not respond to these medications or may have much more severe symptoms that are interfering with their care and quality of life.
At Sunnybrook, we have been studying the effect of methylphenidate (Ritalin®and others) on apathy in Alzheimer’s Disease. In two small studies we have shown preliminary data that suggest methylphenidate is effective at improving apathy, is well-tolerated, and may have some positive cognitive benefits. Along with colleagues in the US, we are currently running our third study which we hope will provide more definitive proof of safety and effectiveness.
In summary, as the title of this blog suggests, we should not be apathetic about apathetic behaviours in dementia. They are very common, they represent a significant source of disability to the patient and a source of stress to the caregiver, they are often confused with other neuropsychiatric symptoms, and they are potentially treatable with appropriate environmental, behavioral and medication therapies.