Living in My Shoes

Imagine waking up in the morning confused, and not recognizing where you are. Imagine walking out of the bedroom and your daughter appears and immediately questions why you are not dressed. Your daughter, who you might not recognize at first, immediately begins to “remind” you of the doctor appointment that you have been told about several times, even as recent as last night. Imagine you are unable to retain new information and did not know of the appointment, so imagine now how you might respond. 

You likely would deny knowing about the appointment, or even arguing that you do not need to see a doctor, as you feel fine. Continue to imagine how this interaction can become intense and both you and your daughter begin to argue. Image the shame you feel because you didn’t remember the appointment and the fear you feel about seeing a doctor you don’t need. Imagine the emotional pain you feel because you want your family member to feel the same emotions as you. Imagine you have dementia.

This is a simple example of what a person living with dementia may feel when they are experiencing confusion. Likely, the above senecio led to a conflict that lasted all morning and the appointment likely had to be cancelled. Being able to show deep empathy for a person with dementia, outcomes are much more productive and pleasant. Being able to connect to the person and feel their emotion, you can better understand and interact with the person more calmly and effectively.

It is not always easy. But practicing your efforts to identify with the persons emotions will result in better relationships, less arguing, and create a shared and meaningful connection. So lets try this same scene again, but using an empathetic approach.

Imagine you wake up confused and do not recognize where you are. You walk out of the  bedroom and your daughter greets you with a smile. She says good morning and invites you into the kitchen for coffee. Imagine you are a bit hesitant, but your daughter walks over and takes your arm gently and says, something to the effect, “You know how your daughter Debbie loves to have coffee as much as you! I have it ready! Have I told you I love you today?”

Image how you become more oriented and comforted by a familiar smile, a kind touch, and the beginning to a routine you have likely enjoyed most of your adult life. While having your coffee, image your daughter apologizing to you for not letting you know of a doctors appointment that morning, but assures you there is plenty of time and you will enjoy breakfast afterwards at a favorite restaurant. Then image her asking you how do you feel about that?”

Lastly, imagine how validated, understood, and loved you feel because your daughter made an effort to recognize your feelings. Empathy can help you to understand the pain, confusion, shame and grief of stepping into the shoes of a person with dementia. But shifting your perspective doesn’t mean you only see things intellectually, but asking questions so assumptions are not made and feeling are not misinterpreted. 

People living with dementia still have emotions, feelings, observations, insights, and opinions, but when we discount the person, and take away their dignity because we have a certain agenda (get to the doctor appointment) rather than go with their agenda (waked up slow, confused and needed the reassurance of trust and safety), the days will become less stressful and relationships can be more meaningful.

The Positive Aspects of Supporting Someone Living with Dementia

In the United States, there is an estimated 7 million adults living with Alzheimer’s disease or other types of dementia, and approximately 75%- 80% of those are living in their home and are being supported by their family. The support the family members provide are crucial in the quality of life and over-all well-being for both the person experiencing memory loss and the family as a whole. 

Studies are readily available to identify aspects of the challenges of providing support for a loved one experiencing memory loss, including the behavioral symptoms that may arise due to confusion and anxiety the person feels. These behavioral symptoms are often not present when supporting someone with other chronic illness’s, thus, research does indicate that supporting someone with dementia can be more challenging and have a negative outcome on the family. 

But a recent study published in the National Library of Medicine shows that with self-efficacy training, in-depth understanding of the behavioral symptoms of dementia and utilizing effective psychosocial interventions, families can have a more positive experience while supporting the family member at home. Other factors that can determine the positive outcome of support at home is the satisfaction, rewards, and personal growth of the family members.

Factors that can result in either a negative or positive experience of supporting a family member with dementia, is the relationships of the family members prior to the diagnosis, the understanding the family members have about dementia, the willingness to learn positive interactions, resilience of the family, motive of home support and the current circumstances of the family.

Programs that promote the positive aspects of supporting someone with dementia, such as the Memory Cafe at FUMC, that offer dyadic relationship interactions to connect the family member with the person with dementia, and taking a whole-body approach to treatment, can enhance the positive aspects of support. 

With positive trainings for family members include learning new communication strategies and observation skills on identify and meeting unmet needs that can cause behavioral symptoms. Staying engaged in social and physical activities, cognitive stimulation, (reading out loud is a great activity), providing opportunities for self-expression, and meeting the spiritual needs of the person living with dementia is a well rounded approach in reaping the benefits of the positive aspects of supporting someone living with dementia.

Learning how to positively support your family member to live with a dementia includes keeping you family and your member with dementia active and engaged in the community. The worse possible scenario is for you and your family member to isolate and be disconnected from friends and neighbors. Social isolation is associated with faster cognitive decline, depression and stress for the entire family. On the other hand, staying active is associated with a reduced risk of cognitive decline and depression.

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.