When I first started working in this field, I thought a big heart and some general knowledge about dementia were all that was needed to meet the other person with compassion. I have found out it is not so. Understanding the brain and the way the dementia process affects the person’s abilities to function and communicate, is essential in order for us to know how to approach and respond to that person. Furthermore, we want to know what type of dementia is involved. Dementia comes in many flavors, and each one will impact the person differently. Below is an overview of what to know about the five most common dementias:
Alzheimer’s Disease
- Memory loss is the most prominent symptom.
- Memory loss causes the person to repeat themselves and to forget appointments. It may also lead the person to accuse others of having ‘stolen’ things they may have misplaced. Always remember that the person is acting that way because of their memory loss, and to not take their accusations personally. You will want to align with the person as you help them search for the lost item.
- Trouble with executive function makes it hard for the person to initiate activities, solve problems, multitask, or deal with changing routines. You will need to help jumpstart the person in their daily activities.
- Visuospatial difficulties can make it hard for the person to find things, or find their way even in familiar settings. They may misperceive objects. This is not due to visual problems, rather changes in the brain are the cause.
- Behavioral changes may include disinhibition, agitation, and hallucinations. Many times, those problems can be mitigated by caregivers. Mindful attention to environmental factors can lessen distress and minimize the likelihood of such behaviors. Also what appears to be hallucinations, may be the person ‘s way of relating their experience of real events. For instance, ‘I got beaten in the shower’ may refer to the person’s experience of being assisted in the shower, and not liking the water pressure on their back.
Vascular Dementia
- Vascular Dementia often co-exists with Alzheimer’s Disease. Symptoms for both diseases are very similar. Vascular Dementia is caused by cerebrovascular factors such as stroke, heart disease, hypertension, etc.
- Trouble with executive function is the earliest and most prominent symptom. This makes it hard for the person to initiate activities, solve problems, multitask, or deal with changing routines. Jumpstarting the person in their daily activities one of the ways that we can best express our love and care.
- Difficulty with gait, either stiffness, shuffling, or falls may cause the person to walk slow. Family members need to learn to adjust their pace to the person. This can become a great opportunity to practice mindful walking while at the same time communicating to the person that we are in tune with their needs.
- The person may become more emotional, and indulge in sudden uncontrollable bouts of crying or laughing. You may be tempted to react. Mindfulness practice helps remain calm and centered.
- Depression is a common occurrence with Vascular Dementia. Learn the signs of depression, and if necessary get professional help for your loved one, including antidepressants and talk therapy during the early stage.
Dementia With Lewy Body
- Dementia symptoms come first or at the same time as motor symptoms. Dementia with Lewy Body may also co-exist with Alzheimer’s Disease, in which case, you will witness symptoms of both dementias.
- Rapid fluctuations in cognition cause the person to alternate between moments of clarity and moments of confusion, sometimes within just hours or days. This is hard on family members who never know what to expect, and also may wonder about their loved one’s mental state.
- This may also manifest as prolonged periods of staring into space, and being oblivious to their environment. Knowing about the symptom can help caregivers relax and let the person be.
- Visual hallucinations are common. Common themes include insects, little children, aliens . . . Lewy Body hallucinations are different than hallucinations in other dementias. In particular, one has to be very careful to not use typical antipsychotics to treat them, as those carry extreme health risks.
- Difficulty distinguishing between dreams and reality is another feature, and may lead the person to act out their dreams. This can be scary for caregivers and may require assistance from a knowledgeable neurologists for meds.
- The person may loose expression in their face, causing others to think that the person has no feeling. We are so used to reading people’s feelings on their face. In this case, we need to go beyond, and understand that the person’s heart is just as engaged with us as before.
- Difficulty with gait, either stiffness, shuffling, slowness, or tremors, may cause the person to walk slow. Family members need to learn to adjust their pace to the person. This can become a great opportunity for us to practice mindful walking while at the same time communicating to the person that we are in tune with their needs.
Parkinson’s Disease With Dementia
- Parkinson’s symptoms come first, and dementia follows after several years.
- Memory loss causes the person to repeat themselves and to forget appointments. It may also lead the person to accuse others of having ‘stolen’ things they may have misplaced. As with Alzheimer’s Disease, remember that the person is acting that way because of their memory loss, and to not take their accusations personally.
- Trouble with executive function makes it hard for the person to initiate activities, solve problems, multitask, or deal with changing routines.
- Visuospatial difficulties can make it hard for the person to find things, or find their way even in familiar settings. They may misperceive objects.
- Just like with Dementia with Lewy Body, rapid fluctuations in cognition cause the person to alternate between moments of clarity and moments of confusion, sometimes within just hours or days. Visual hallucinations are also common. If hallucinations are harmless, go with the flow and discover the person’s altered reality with them.
- The person may have trouble coming up with the right words during conversations. We are so used to moving swiftly through our speech, that it may take us a while to get used to slowing down and wait for the other person. Mindfulness practice can be a tremendous help.
- They may have trouble following difficult conversations. More patience is required of us here, as we need to practice pausing often, and breaking down our conversations into smaller bits.
- They may make false accusations or have abnormal beliefs that are not true. It is helpful remembering the brain is at work here, not the person. If we were in their shoes, with the same brain, we too would be making those same claims.
- They may feel anxious about the future. Depression is also common. Learn to recognize the signs and seek professional help if necessary.
Behavioral Variant of Frontotemporal Dementia
- Behavior is the most prominent symptom to start with. bvFTD may co-exist with other dementia types including Alzheimer’s Disease.
- Memory is not affected, at least at first.
- This is a particularly challenging dementia for family members. The person may have no insight into their behaviors, and caregivers may be the ones suffering, not them. The loss of empathy often feels as an excruciating loss on the caregiver end. “My husband who loved me so much now does not seem any more.” Loving kindness practice can help as one is asked to show love without the expectation of any kind of love back.
- The person may become disinhibited and engage in socially inappropriate behavior, lose manners, or engage in impulsive actions. They may also become obsessed with eating often, or engage in other compulsions. bvFTD requires extreme patience. Caregivers need to recognize the fact that it takes a village to care for the person with bvFTD.
- The person may show apathy and loose interest in previous activities. As with other dementias, this means lending some of our executive function to the person, so that they can still participate in every day activities.
- If the person stares into space for hours, we need to not project our own discomfort or our own idea of what it must be like for them. We just let the behavior be.
If you don’t recognize your loved one in any of the above descriptions, this may be because you are dealing with a more rare type of dementia. Diagnosing such dementias may require having your person seen by a behavioral or a geriatric neurologist, specialists with the most advanced dementia training. If you are not sure and would like to find out more, I will be happy to point in the right direction. Just email me . . .
Last, as always remember to practice self-compassion for yourself!