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Dementia

Dementia: The Loneliest Disease

John Trevey on Dec 4, 2024
Dementia: The Loneliest Disease
Table of Contents
  1. Dementia: The Loneliest Disease

Dementia: The Loneliest Disease

Dementia does more than take your memory. It can take your friends, your family and your purpose. The stigma related to the disease as well as the symptoms of the disease itself can cause those who are living with dementia to feel isolated, even when surrounded by people.

Susan Frick, a social worker with the Rush Alzheimer’s Disease Center, has been working with people living with early-onset Alzheimer’s for 18 years. In her time working with this community, she’s noticed a common symptom not often talked about with dementia and Alzheimer’s: loneliness.

In her TEDx Talk “Loneliness and Alzheimer’s Disease”, Frick shares that her clients often feel like they’re in a pit or a hole, a place where they’re alone, where people can’t see them and sometimes ignore them.

This can be true for caregivers too. As the disease progresses, she explains, caregivers often feel like it is just them and the person they’re caring for. The rest of their community seems to drift away.

Dementia and Alzheimer’s don’t have to be such isolating experiences, and they shouldn’t. Research shows that social interaction is good for those who are living with dementia and can even help slow their symptoms.

In her TEDx Talk as well as an interview with Dementia Untangled, Frisk offers explanations and advice for how families and friends can better understand the loneliness that comes with dementia and what they can do about it.

Why does dementia cause loneliness?

Frick explains that dementia causes loneliness on two levels: the disease level and the stigma level.

1. The Disease Level

Dementia causes cognitive decline, which affects memory, speech, attention, skills, the ability to perform activities of daily living, etc. Not being able to follow a conversation, complete a task or do the things you once did is a difficult experience that can cause shame, anger, anxiety and even depression. Many people who are living with dementia will naturally want to disengage socially due to the shame associated with these symptoms.

2. The Stigma Level

Frick says that her patients have talked to her about how they were treated differently by their friends and family almost immediately upon their diagnosis. People stopped speaking directly to them. They stopped inviting them to things, asking them for help or advice. People avoid what they don’t understand, and the majority of the population doesn’t fully understand dementia and Alzheimer’s. Sadly, this means many friends and family will avoid someone they love who is living with dementia simply because they don’t understand what that person can and cannot do or can and cannot understand. This only causes further isolation for the one who is living with dementia and for that person’s caregiver.

Both of these types of loneliness, Frisk points out, can cause someone to lose her sense of purpose. When you are no longer able to do the things you once did, and when those you love stop calling or spending time with you, you can easily lose yourself. You no longer have purpose in your day. A sense of purpose, like social connection, is crucial to maintain if you are living with dementia. Without it, your disease can progress more quickly.

Taking on the Role as a Care Partner for Someone with Dementia - The Breckinridge Memory Care - Lexington, KY

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How can friends and family reach out to those who are living with dementia?

If you have a friend, neighbor or relative who is living with dementia but you’re not sure how to reach out to that person, Frick offers a few suggestions:

1. Move past your discomfort.

If you haven’t spent time in the dementia community, it’s natural to feel uncomfortable around someone who is living with the disease, but Frick encourages people to not let their own discomfort prevent them from reaching out. Know that you will feel somewhat uncomfortable and that’s ok. The more time you spend with someone who is living with dementia, the more you will understand that person’s diagnosis and how it’s affecting them and the less trepidation you will have.

2. Don’t say “if there’s anything I can do…”

While friends and family mean well when they say something like, “If there’s anything I can do, let me know,” this often puts an additional burden on the caregiver. Caregivers have a lot on their plates. Figuring out how to ask for help or what to assign their well-meaning friends and family can feel like another task added to their lists.

Instead of asking what you can do, tell a caregiver what you will do. For example, offer to come over on Sunday afternoons and do a puzzle with the person who’s living with dementia or offer to grocery shopping with them once a week. Decide what social activity you can do and when and run it by the caregiver to make sure it’s appropriate.

3. Let their interests determine what you do.

Frick also suggests letting the person who is living with dementia lead as far as what social activity you will do together. That person has interests and hobbies. Do what he likes—activities that make him feel connected, calm and himself.

4. Get connected with Dementia Friends

Dementia Friends is an organization that helps educate the public about dementia and connect volunteers, or “friends,” with those who are living with dementia. You can learn more about the organization and how to become a friend here.

How can caregivers and those living with dementia get support?

If you are living with dementia or caring for someone who is, you already know how lonely and isolating it can feel. Frick facilitates support groups for those with early-onset Alzheimer’s. “There’s something healing about being around others who understand,” she says.

Support groups are full of people who are going through what you’re going through. They get it. They understand you. To find a support group near you, visit the Alzheimer’s Association website here.

Dementia is a lonely disease, but it doesn’t have to be. Get educated. Reach out to someone you know who is living with the disease. Perhaps more than any other condition, those who are living with Alzheimer’s need social connection. The more we can understand the disease, the better we can connect with the millions of Americans who are living with it.

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Covid Information

Continuing an Environment of Caring in Times of COVID-19


Safety of Residents and Staff

As the coronavirus (COVID-19) pandemic continues to evolve, our communities are focused on keeping our Residents and staff safe while also maintaining Resident engagement and daily fulfillment. We are taking a cautious approach, balancing the highest level of safety within the least restrictive environment.

We will continue to follow and augment State and C.D.C. safety recommendations:

Screening: We screen every employee every day. We require our staff to complete a questionnaire (inquiring about possible symptoms, recent travel and exposure), have their temperature and oxygen level checked before entering the building. Staff are also required to clean their cell phones, keys and wash their hands while being observed. We monitor our Residents’ health closely with temperature and oxygen level checks at least twice a day. We help our Residents wash their hands throughout the day and encourage them to wear a mask or face covering.

Cleaning: We have enhanced our cleaning products with regard for their effectiveness in killing COVID-19 particles and proper sanitization and disinfection, using the EPA’s specific list of disinfectants for use against the coronavirus. We are using this list and training staff on how long cleaning solutions must be kept on a surface before wiping it off to ensure its effectiveness. We prioritize cleaning high-touch areas and horizontal surfaces, cleaning them several times a day.

Physical Distancing: We encourage 6 foot distancing between Residents and with staff unless they are providing direct care to a Resident.

Testing: We test all Residents and staff for COVID-19 every three weeks, and more as needed. Our nurses utilize a PCR test, which we send to a private lab to expedite results.

Physical Changes: We have installed ultraviolet lights in our air conditioners that supply air to the common areas of the houses. This method is believed to be helpful in killing bacteria that is cycled through the systems and pushed back into the house. We’ve also enhanced our HVAC filters to near HEPA levels, trying to add additional layers of protection to keep COVID-19 out of the building. Most importantly, air purifiers have been added to common areas and each resident room.

PPE: Staff members wear masks at all times and we encourage Residents to wear masks when outside their rooms. We also encourage physical distancing between our Residents. Staff wears additional protective equipment when deemed necessary while caring for our Residents. Staff are continually trained on when and how to use personal protective equipment (PPE).

Individual Needs Stay Paramount

The uncertainty surrounding COVID-19 affects us all. At our communities, we are not letting it stop us from safely offering a life well-lived. Above all, we are providing the utmost attention to the safety and well-being of our Residents. Our Program has always revolved around the individualized needs of each Resident and this has not changed during COVID-19. Residents are still able to connect with each other and staff while maintaining a safe physical distance. Weather permitting, we enjoy the patio and large backyard. We continue to keep our Residents engaged through cognitive, physical, recreational experiences. We offer enjoyment and connection throughout the day even during these unprecedented times.

Visitors

Since early March we have restricted facility access to prevent the spread of COVID-19.

Essential Visitors: Healthcare providers including physicians, home health, private duty services, physical therapy and hospice staff have not been allowed in the communities unless there is an acute, essential need for our Residents. These services continue as needed through FaceTime, tele-med and phone conversations. If physical access is absolutely necessary, the individual will complete our questionnaire and screening for temperature and oxygen stats. No one is allowed in the community if they fail to meet our screening criteria.

Families: We are happy to help schedule window visits, FaceTime, Zoom and phone calls with your loved ones based on what is allowed and prudent. To ensure the proper support from our staff, our visits are scheduled ahead of time.

Tours and Move-Ins

Tours: We recognize that regardless of the changes with COVID-19, your need for senior living hasn’t changed. For the safety of you, our Residents and staff, we are currently offering virtual tours where you can see our community, as well as meet our staff. Please contact our Community Relations Director to set up a virtual tour.

Move-Ins: We are accepting a limited number of move-ins (unless otherwise instructed by public health department). New Residents must be tested for COVID-19 prior to move-in. Upon admission, we will place a new resident in their room to quarantine as an additional precaution.

We will share community-specific information with residents and families as our quarantine measures continue to evolve with new information of COVID-19.

We are honored to care for your family member and loved one.

 

Comments we’ve received from our families during COVID-19.

“We appreciate all of your efforts. Your team clearly is a leader in the response to COVID. Thank you for keeping our loved ones safe.”

Joseph

“Thank you, thank you, thank you for ALL you have done and are doing to keep the residents and staff in a safe environment! The continuous learning and improvements empower caregivers and families to do better at home and in our communities.”

Tommy

“I appreciate you taking the time to update us and share them with my family living in AL, GA, VA, MD, FL…we are extremely grateful and comforted by your proactive and decisive measures! We’ll continue to keep you in prayer for health, safety and more.”

Rebecca

“In keeping with the parade theme you had, the employees there are super heroes. They are plowing forward in the midst of this horrible virus and taking care of their patients selflessly. I just wanted to acknowledge their bravery and dedication and thank them from the bottom of my heart for the goodness in their hearts and their dedication to their patients and jobs.”

Abigail

“Thank you! You locked down early & your diligence has paid well.

The Bader support group continues meeting once a month by Zoom. We all appreciate you so much. Everyone comments on how grateful we are that our parents are at The Breckinridge!

We appreciate everything: sending us pictures, calls, alerts to bring supplies/clothes as needed, staying in virtual contact with hospice.
Blessings to each of you.”

Marsha

“Thank you for all y’all and all the staff are doing for my mom and the other residents. We truly appreciate your hard work.”

Carol

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