Dementia: A Misunderstood Disability

A person living with and without a disability wants to experience a sense of belonging, feel accepted, and have a valued and meaningful purpose in their life. Having social relationships with friends, and staying active in their community promotes a life of quality. However, social inclusion of children and adults with disabilities continue to be a challenge due to a lack of education and awareness, and even disregarding the legal rights of those with a disability can occur. Discrimination of a group of people causes prejudices and preconceived beliefs of their abilities, needs, and feelings. 

So is dementia a misunderstood disability? According to the Centers for Disease Control and Prevention: 

“A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).” This can include disabilities that affect a person’s thinking, remembering, movement, learning, communication, and social relationships.

From a legal standpoint, the Americans with Disability Act (ADA) defines a person with a disability “as a person who has a physical or mental impairment that substantially limits one or more major life activities” and the person may qualify for Social Security Disability Benefits. People living with dementia are often discriminated against in the work force, even though the ADA makes it “unlawful to discriminate against a person based on that person’s association with a person with a disability.” Often people are “forced to retire” when they disclose a diagnosis of dementia at a work place and accommodations to adapt the job skills are seldom even considered. 

Inclusion of all people in our communities is not just a legal right, but it is the right thing to do. So why do we not recognized that a person living with dementia is actually is living with a chronic disability? Could better education and understanding of what dementia is and is not help lessen the stigma that a diagnosis of dementia brings to both the person and the family?

When people are excluded from participating in every day community life, social isolation can occur and the loneliness and lack of stimulation can have adverse outcomes.  We saw the sad and serious consequences of social isolation of our seniors living alone during the COVID-19 pandemic.  

Keeping you and your family member active is your community, and especially in your church, is so important to reduce the loneliness that a diagnosis of dementia can bring. Staying connected with others improves overall well-being not only for the person with dementia, but also for the family and friends as well.

 Most accidents in the home occur during daily activities such as eating, bathing and using the restroom.

Taking measures to improve safety can prevent injuries and help a person with dementia feel more relaxed, less

overwhelmed and maintain his or her independence longer.

• Avoid serving food and beverages that are too hot. The person with dementia may not remember to check the temperature. 
• Install walk-in showers.
• Add grab bars to the shower or tub and at the edge of the vanity to allow for independent and safe movement. 
• Add textured stickers to slippery surfaces.
• Apply adhesives to keep throw rugs and carpeting in place, or remove rugs completely. 
• Monitor the hot water temperature in the shower or bath. Consider installing an automatic thermometer.
• Pay special attention to garages, work rooms, basements and outside areas where there are more likely to be tools, chemicals, cleaning supplies and other items that may require supervision.

   

Ecopsychosocial Interventions for Cognitive Decline

Typically the first treatment of choice for physicians when addressing cognitive decline, Alzheimer’s disease, and other dementia is a pharmacological approach. Unfortunately, despite decades of research, there is still no medication to treat neurocognitive disorders. A person may be prescribed medication that may help with the symptoms of cognitive decline, such as anxiety, restlessness, and sleep disorders, and "possible" slow the progression, but often these drugs have side effects and may even sedate the person living with dementia so much that it interferes with daily activities.

There is, however, another treatment approach that not only addresses the symptoms of a neurocognitive disorder but can improve the quality of life for both the person and the family members providing care and has no side effects! Once referred to as a “nonpharmacological” approach, which only describes what the intervention is not (not a drug) and not what the intervention is, is underutilized because of a lack of awareness and funding for training families.

Ecopsycosocial interventions focus on the person's social environment, relationships and interactions, learning communication techniques, teaching strategies for connectedness and engagement. This is a whole-body approach and addresses the physical, cognitive, social, expressive, and spiritual needs of the person and the family. Interventions include music, exercise, visual arts, reminiscent therapy, validation therapy, and tapping into hobbies and meaningful activities.

So why are families not using this approach? Because it is not as easy as just dispensing a pill that they think might help. The day-to-day responsibilities that a family member can experience when caring for a loved-one diagnosed with dementia may feel like additional work. When in reality, this can easily be done with the appropriate training. Research shows that staying engaged with the person with memory loss and participating in activities together can reduce many symptoms, such as anxiety and worry. When someone is engaged in a meaningful activity, there is no need to exhibit the stress that the person so often feels.

Many families find that developing a meaningful daily routine early into the diagnosis will make the progression of memory loss much easier. Begin the morning at breakfast (yes, eat together) and perhaps share a daily scripture to engage in a conversation. Taking a morning walk together and plan time during the day to enjoy music, dance, and sing.

Medications may be helpful in some types of dementia, but learning how to validate your family member’s feelings, avoiding correcting your loved one on inaccurate facts, and allowing the person to have purpose and meaning in their life by reminiscing events, can make for a much pleasant and less stressful day. These interventions are not only helpful to the person living with memory loss but a natural way for the family members providing care to take care of their own well-being and improve their quality of life.