Addressing the Stigma of Dementia & Caregiver Burnout

Dementia is a neurodegenerative condition that affects cognitive function, and according to the World Health Organization, 50 million people worldwide have it; around 10 million new dementia cases are diagnosed each year. Alzheimer’s disease falls under the broad term “dementia” and is the most common type of dementia.    

Dementia is essentially brain failure—not a character flaw or weakness of the person—and when the brain is dying it will make mistakes. One day a person with dementia will know how or be able to do something and the next they might not. This is because the brain is going through chemical and structural changes while slowly deteriorating. 

Dementia is generally a syndrome, not a disease, and constitutes a variety of symptoms—difficulty planning, misplacing things, difficulty making decisions, withdrawal from socializing, changes in personality or mood, challenges understanding visual information—that affect memory, reasoning, cognitive abilities and daily activities. (Alzheimer’s, however, is a progressive brain disease.) 

The Stigma of Dementia

Stigma, especially when it comes to the language used when describing dementia, can have a profound effect on the quality of care that a person with dementia will receive. Stigma prevents many people living with dementia from receiving proper care. People living with dementia may self-isolate, which can cause depression and anxiety, and, in extreme cases, suicide. 

One way to reduce stigmatizing language is to say that a person is “living with dementia” rather than “suffering from dementia.” Another example is changing the term “caregiver” to “care partner.” Family members, care teams and patients are on this journey together, and a partnership is what is needed to achieve the best outcomes. 

People living with dementia have historically not been seen as active in consciously participating in their care and treatment. However, according to a 2013 study, excluding patients from decisions can result in depression, frustration and anger, exacerbating the effects of the existing neuropathology and rendering the person more debilitated.

The best way to be supportive on the journey is to create authentic partnerships. The connection and relationship one has with the person living with dementia is important. Be aware of changes the person is going through—vision changes, language changes, taste changes and sensory motor changes—and how these changes present themselves uniquely in that person. 

Learn how to interact with and support the person living with dementia in a way that honors their dignity and personhood. Instead of trying to correct the person with dementia, try to validate their experience and operate from a strengths-based point of view. (“You’re trying so hard and doing the best you can,” rather than, “Why can’t you ever finish your sentences?”) If the person becomes angry with you, try not to take it personally, because the person is not aware they are treating you poorly. In many cases, the person with dementia lacks the ability to be reasonable and rational, has a hard time making choices, and has less impulse control. 

Get to know the person and see how they can be an active participant in their care and treatment—perhaps you can adjust the arrangement of their home environment or ask them what activities they like to engage in. By making the care process collaborative, everyone will be at their best. 

Care for the Care Partner

Family care partners have a difficult role. Care partners act as both emotional and physical support. But who cares for the care partner? One cannot constantly fill someone else’s cup without replenishing one’s own. This is where a home health agency can step in.

Care partner stress is normal, and probably to be expected. Awareness of stress is an important first step in reducing it, but there are other steps as well. Some common signs that someone may be overworked or is not practicing self-care are: persistent anger at the person with dementia, social withdrawal, denial that the person has dementia, emotional sensitivity, exhaustion or feeling burnt out, anxiousness or anxiety, an inability to concentrate or forgetfulness, lack of sleep and an increase in health problems. 

If your employees notice these symptoms in the family members of their clients, is important to point them to professional help. Community programs exist that can help relieve family care partner stress. 

Your agency can direct clients to a variety of support resources: a care partner support group, their family doctor or the family doctor of the person with dementia, an Alzheimer’s or a dementia society, community organizations (i.e., senior centers, food banks, religious charities) and a local or regional public health department. You can also often contact the health and wellness department of a local college or university to see if they know of any additional resources in your area. 

Families must consider when is it time to move to long-term care. This kind of planning takes time and research, and home health agencies can provide a guide for families as they plan. There are long-term care options that provide additional carers during the day or just at night, or those who can be with the patient at all times. No matter what level of care is chosen, the decision should provide the family with less stress and more comprehensive care for their loved one. 

Dementia is a difficult diagnosis to live with, and it is a journey not chosen. Thanks to care partners—both family and professional—who become more aware and knowledgeable, everyone on the journey can find comfort, companionship and joy with the thought that there can be better days ahead.