Becoming Dementia Friendly, Part 1

 In North Carolina, one in seven adults age 65+ has Alzheimer’s Disease. There are over 50,000 adults age 65+ in Buncombe County, which means over 7,000 Buncombe County residents are living with Alzheimer’s Disease. In fact, Alzheimer’s Disease is the fifth leading cause of death in Buncombe County. Considering that Alzheimer’s accounts for only 60-80% of dementia cases, the number of people in our community living with dementia is substantial.   

People living with dementia can continue to live a full life for years following their diagnosis. Yet fears and misconceptions about dementia persist, often leading to individuals being excluded, looked down on, dismissed and even discriminated against. Age-Friendly Buncombe County recognizes that September is Alzheimer’s and Dementia Awareness month, so this month, we will focus this blog on what it means to be a Dementia Friendly Community.    

One of the most powerful ways to debunk the stigma associated with dementia is to ask and listen to those who are themselves living with dementia. The following quotes and ideas were shared by members of the Cheers Group, a support group for people with a dementia diagnosis. The group is facilitated by the Family Caregiver Program at the Land of Sky Area Agency on Aging and these quotes are being shared with permission.     

• People feel free to say you’re confused, but I also have trouble walking; no one would be so rude as to say ‘you sure can’t walk worth a darn’.  
• When I tell someone I have dementia and I have trouble remembering, people say ‘Oh I have trouble remembering too’.  It makes me feel like they are being competitive or just not listening.  I would like to say, ‘You have memory problems?  Call me when you forget something 15 times.  Losing your keys is nothing compared to losing your house’.  
• In former times, people didn’t tell others about having a disease.  Now people will say they have cancer or bad lungs or heart disease, but not dementia.  It’s a big secret.  Sometimes families hide their loved ones away and won’t allow anyone to see them.  To preserve dignity or to hide shame? 
• I often feel people aren’t really listening, but are making assumptions.  I want people to know that there are times when I can’t get through a single task because I can’t keep the thought of what I was doing in my mind.  When people don’t listen, it’s upsetting.  Ask me a question about what’s it like, don’t compare your experience to mine. 
• People are uncomfortable with the level of difficulty I am having.  Perhaps this is why they emphasize that I look normal and talk well.   
• I’m often told, ‘You don’t look like you have dementia’.  No one says, ‘You don’t look like you have diabetes’. 
• Many folks seem to think if someone has dementia, the person’s gone. 
• If someone has heart trouble, you wouldn’t think, I can’t talk to them.  With dementia, sometimes people hesitate to talk to me as if I have lost all ability to communicate.  
• When you have dementia you are just a person who has something to deal with like any other disease.  You wouldn’t leave someone behind if they have COPD and needed some extra time to walk.  With Dementia, I need people to give me extra time to respond. 
• When my Mother-in-law had difficulty breathing and found out it was COPD, she said, ‘Oh good. I thought I had cancer’.  Now this is how people feel about dementia. 
• Dementia reduced my ability to complete tasks that require several steps. I get distracted.  I go to do something and end up starting something else.  I leave items wherever I am and then end up searching for them later. 
• I value the people who talk to me about my life instead of speaking to my caregiver about me.  Sometimes the doctor asks my husband how I’m doing and I say, “Can I answer that? 
• I’ve noticed that people with dementia come from all aspects of life, professors, carpenters, doctors, mechanics, stylists.  
• It is irritating when a person says ‘I forget things too’ as if they are struggling with the same situation.  Even though empathy is the intention, it feels like the person is downplaying the significant challenges.  

These statements reveal how even well-intended comments can be rude, upsetting, or irritating. The Cheers Group members were also asked to share what helps them remain engaged and connected:  

• It helps when people don’t assume what’s going on with me.   
• It helps when someone asks, “If you get stuck, would you rather I helped you or waited?” 
• I need social contact; it helps if family and friends and others understand my condition. 
• When people understand if I can’t get a word, I will describe what word I am looking for.  It becomes a group effort and can be fun.  I feel we are working together.   
• When people understand that sometimes if you will wait and I need help, I will ask. 
• When people understand that things don’t work like they used to.  I may not be quite as quick. 
• When a friend joked, “When you think of that word, give me a call”. 
• When my family was seeking information, I asked them to call MemoryCare to understand and they did. 
• When I give people permission to tell me if something seems out of the ordinary with me. 
• When I say, “Stop me if you’ve heard this”.  It makes other person feel comfortable. 
• When I get upset, it helps if people understand that there may be something else going on – it may be something underneath the surface.  I may not always know what it is.   
• I need more sleep than before.  Spouse now recognizes this. 
• When people ask, “How can I understand more?” 
• I used to get irritated with my spouse when she would ask questions about something I typically do - did I forget to do it?  I was trying to stay in a routine.  I realized she was trying to help so I started thanking her.  I took more control over things like taking meds.  I use a recording of my own voice that does reminders. 
• People want to get me organized.  It works better if I do the organizing.  This helps me to remember where things are and generally makes more sense than another person’s idea of organization.    
• When I have no desire to do anything, it sometimes helps if loved ones are more insistent.  This can bolster motivation.  Other times it can build resistance. 
• Caregivers who listen more and keep in mind their loved one is very changed and continually changing.  Nothing stays the same and a person with dementia is not doing these things to be difficult.  

Dementia Friendly Communities foster the ability of people living with dementia to remain in community and engage and thrive in day to day living. Our next blog will feature some of the local programs, resources and activities helping to build our very own Dementia Friendly Community.