Man on the Inside
The Alzheimer’s Hub of Hope has four sections: Heroes, Highlights, Headlines and Helpers/Caregivers. This post is aligned to the helper/caregiver section.
Man on the Inside. It is an eight part series on Netflix set in a retirement / memory care facility. Ted Danson plays a great part (perhaps he wasn’t acting, he’s 77 years old) going undercover to catch a thief among the residents and workers. I really enjoyed the show and have often thought that “old person” humor could be funny if it wasn’t mean spirited. I think Man on the Inside was successful in doing that.
In the final episode, the thief was caught and the stolen items returned. At the end of that episode there was a conversation between the Ted Danson and the son of the resident who paid for the private investigation. The son was happy to have the stolen items returned but was too busy to actually visit his elderly mother.
This made me think of my Are Alzheimers Suffers the New Lepers? post from several years ago. It’s still relevant. I copied it below.
Here’s a link to Man on the Inside’s trailer.
History Demonstrates Lepers are to be Avoided and Isolated
When you think of lepers what do you think of? Likely you think of people who should be avoided or shunned to protect yourself and the public. You might even think they live amongst themselves in special, isolated, communities away from mainstream society. If you think this way, you have good reason to since this reality is consistent across cultures and time.
In ancient Greece, leprosy was considered a highly stigmatized and feared disease. The Greeks believed that leprosy was a punishment from the gods for committing sins or offenses. They associated it with divine retribution and believed that the afflicted individuals were being punished for their moral transgressions. Lepers were often ostracized and isolated from society. They were seen as unclean and contagious, and there was a deep fear of contracting the disease. Lepers were typically forced to live in leper colonies or secluded areas outside of the city to prevent the spread of the illness.
In the Bible, specifically in the Old Testament, leprosy is mentioned on several occasions. For example, Leviticus 13-14 provides detailed instructions for the identification, diagnosis, and management of leprosy. Lepers were required to present themselves to the priests, who would examine their condition and pronounce them clean or unclean. If declared unclean, they were to be isolated from the community.
Leper colonies are located on every continent for instance, Culion Island, located in the Philippines, was home to one of the largest leper colonies in the world and accommodated thousands of leprosy patients at its peak.
Why Alzheimers is the New Leprosy
Alzheimers is the new leprosy because Alzheimers sufferers are treated like lepers. I base this opinion purely on observation and anecdotal evidence but believe it to be true. As I spend more and more time visiting at a memory care facility and interacting with sufferers it became clear to me that few people visit their suffering friends and relatives. Even longtime childhood friends don’t stop over.
Essentially they are treated as lepers. They are shunned and people keep their distance. The memory care facility is the modern day leper colony.
Why don’t people visit?
There could be several reasons why some people may not visit individuals with Alzheimer's disease as frequently as others or at all. Here are a few possible reasons.
Lack of awareness: Some people may not fully understand Alzheimer's disease and its impact on individuals and their families. This lack of awareness can lead to misconceptions, fear, or discomfort, causing them to avoid visiting or interacting with Alzheimer's sufferers.
Emotional difficulties: Alzheimer's disease is a progressive condition that affects memory, cognition, and behavior. Witnessing a loved one's decline can be emotionally challenging and distressing for some individuals. The fear of seeing their loved one in a diminished state can make it difficult for them to visit regularly.
I’ve heard of friends not visiting because they want to remember the sufferer in their pre-disease state; when they had all of their faculties.
Communication barriers: As Alzheimer's progresses, individuals may experience difficulties with communication, making it challenging to hold meaningful conversations. Some people may feel uncertain about how to interact with someone who has difficulty recognizing them or engaging in coherent dialogue, leading them to avoid such interactions.
Stigma and discomfort: Society still carries a certain degree of stigma around mental illnesses, including Alzheimer's disease. This stigma can lead to discomfort or avoidance in social situations, which may impact the frequency of visits to individuals with Alzheimer's.
How Visits Benefit the Alzheimer Sufferer
Visiting individuals with Alzheimer's disease or any form of dementia is essential for their well-being and quality of life. Regular visits can help maintain social connections, reduce feelings of isolation, and provide emotional support. Here are a few points to consider.
Impact of Visitation: Research suggests that visits from family members, friends, and loved ones can improve the mood, cognitive functioning, and overall well-being of individuals with Alzheimer's disease. Visits can help stimulate memories, provide a sense of comfort and familiarity, and enhance their emotional state.
Benefits of Familiar Faces: People with Alzheimer's often respond positively to familiar faces, even if they struggle to remember specific details. Regular visits from family members or close friends can help maintain these familiar connections and foster a sense of comfort and security.
Regular and consistent visits provide ongoing support and companionship.
It is important to note that the specific needs and preferences of individuals with Alzheimer's can vary. Some may enjoy and benefit from frequent visits, while others may prefer shorter, more frequent interactions. It is essential to consider their comfort, individual preferences, and any guidance provided by their healthcare professionals or caregivers.
How Does the Lack of Visits Feel?
When individuals with Alzheimer's disease are not visited, their feelings and experiences can vary depending on the individual and the stage of their condition. Here are some possible emotional responses:
Loneliness: Feelings of loneliness and isolation are common when someone with Alzheimer's is not visited regularly. They may long for companionship and social interaction, and the absence of visitors can amplify their sense of isolation.
Confusion: Alzheimer's can cause cognitive decline and memory loss, making it difficult for individuals to remember recent events or understand why they are not being visited. They may feel confused about the absence of familiar faces or struggle to comprehend why loved ones and friends are not present.
Sadness and depression: The lack of visits from loved ones can lead to feelings of sadness and depression in individuals with Alzheimer's. They may feel a sense of abandonment or loss, particularly if they were used to regular visits before their condition worsened.
Anxiety and agitation: Alzheimer's disease can also cause anxiety and agitation. When individuals do not receive regular visits, they may experience heightened anxiety due to a lack of social stimulation and the uncertainty of their situation.
Decreased self-worth: The absence of visitors can impact an individual's sense of self-worth and identity. They may question why people aren't visiting, leading to feelings of inadequacy or a diminished sense of importance.
Regular visits and social interaction can have a positive impact on the well-being of individuals with Alzheimer's, providing them with comfort, connection, and stimulation.
My Recommendation is to be Proactive
As a caregiver you want the best for your care receiver and visitations by friends and relatives are part of that best life. So how can you facilitate this to happen? Here’s what I would do:
Create a list of your care receiver’s friends and relatives that you think he would like to see (but haven’t visited)
Contact these people and make a pitch for a visit. Perhaps something like “You’ve been a friend of my Dad for 30 years and he’d really like to see you again. Will you visit him sometime?”
You can also make it easy for the friend by offering visit together or even drive them
Encouraging someone to visit an individual with Alzheimer's requires a thoughtful and compassionate approach. Here are some suggestions on how to encourage others to visit:
Educate them about Alzheimer's: Provide information about Alzheimer's disease, its progression, and the challenges faced by individuals with the condition. Explain the importance of social interaction and support in maintaining their well-being. Sharing knowledge can help dispel misconceptions and create understanding.
Express the individual's desire for company: If the person with Alzheimer's has expressed a desire for company or has mentioned missing certain people, convey this information to potential visitors. Let them know that their presence would be valued and appreciated by the individual with Alzheimer's.
Share personal experiences: Share your own experiences of visiting the person with Alzheimer's. Talk about the positive impact visits have on their mood, engagement, and overall well-being. Personal anecdotes can help others understand the significance of their visits.
Offer reassurance and guidance: If the person is hesitant or unsure about visiting someone with Alzheimer's, offer reassurance and guidance. Address any concerns they may have, such as communication difficulties or how to interact. Provide simple strategies for engaging with the individual, such as bringing familiar objects or photos to facilitate conversation.
Arrange convenient and comfortable visits: Make the process as easy as possible for potential visitors. Offer to coordinate the visits, suggesting specific dates and times that work well for both parties. If needed, provide transportation or assistance to ensure a comfortable visit for both the visitor and the person with Alzheimer's.
Emphasize the value of their presence: Stress the importance of their visit in terms of emotional support and connection. Explain how their presence can contribute to the overall well-being and quality of life of the individual with Alzheimer's. Help them understand that even short visits can make a meaningful difference.
Feel free to contribute $1.00 here to help support my work.
My wife Ann has just come home from a residential care facility after over seven years in care. I visited daily and noted that few other residents had such frequent visits from family. I also noted that as those with Alzheimer's or similar conditions causing increasing disassociation with the world would receive fewer visits as the condition advanced. Sad to see, but at some level, understandable. However, as I remind our family, it's not about them and their feelings, it's about their loved one's needs. Ann is apparently unresponsive to people but is definitely affected positively by social interaction with noticeable, albeit small, improvements in her demeanour. Ann, being the first person to survive an end-stage Alzheimer's diagnosis (imminently terminal end-stage Alzheimer's prognosis late 2017) is on a different path to most. Another point, as a close in caregiver, is that I need the social contact as well, it can be a lonely battle!