Is Chatham County “dementia-friendly”? Technically, no, but Jackie Green would like to see that change.
Green, the exercise instructor and activity coordinator for the Chatham County Council on Aging, has embarked on an effort to introduce the concept to Chatham County and its businesses.
Green was born and grew up in a small town outside of Albany, New York. She came from a family of five children living on a small farm with horses, dogs, ducks, cats, and an occasional cow and pig.
She started her professional career as an electrical and computer engineer with IBM in Endicott, where she met her husband, Jim, while playing co-ed soccer. The moved to North Carolina when their children, Jason and Angelica, were 3 and 1, respectively. At that time, Jackie became a small business owner to allow her to also be a stay-at-home-mom. When her children were teens, she became a personal caregiver for her parents and in-laws, being thrown into the world of dementia and Alzheimer’s disease. After her parents’ deaths, she worked nearly five years in activities and resident care in a senior living community in Cary in the secure dementia unit.
She enjoyed working with the residents and supporting the families and today loves enriching the lives of the seniors in Chatham County. Jackie was involved from the beginning with Dementia Capable Cary and is a Certified Dementia Practitioner and Dementia Capable Education Liaison. Their children are grown and out on their own but thankfully close by. When Angelica graduated from high school, Jackie and Jim moved to Sanford and started Priority Farm, raising Alpacas with the mission to mentor children from single-parent families. They now have 10 alpacas, a livestock guardian dog (a Great Pyrenees names Levi), chickens, and an angora rabbit named Violet.
Why are you interested in helping those with dementia?
My interest in dementia started when I became a caregiver for my father-in-law and then my mother. My father-in-law was an active, very physically fit retiree who loved to volunteer. One day while doing his volunteer driving route that he had done many times before, he got lost and had to call to have someone come pick him up. This resulted in a doctor visit and he was diagnosed with Alzheimer’s disease.
My husband, Jim, and I were the only family in the area for his parents and we knew that we were going to have to help in any way we could, so we started researching the disease and what we were facing. Eventually his diagnosis was changed to terminal brain cancer, Glioblastoma Multiforme, with associated dementia. I took on the role of patient advocate and personal caregiver for my father-in-law to the point of assisting him with his activities of daily living and was on a steep learning curve. His battle with his cancer lasted about 18 months and this directly overlapped with my the beginning of my mom’s experience living with dementia.
When Jim and I started researching Alzheimer’s disease to help his parents, we realized that my mom had similar symptoms. My mom showed signs of dementia for years before a formal diagnosis. At first our family did not recognize her symptoms: labeled light switches in a house she had lived in for 25+ years; little notes to remind herself of things that should have been automatic.
Her primary care doctor of over 20 years didn’t address the issue either. Perhaps it was because mom’s social graces were still in place for so long. This is common for people in beginning stages of dementia. Perhaps we all saw the signs but were so busy with our own lives that we didn’t want to interfere or maybe we were scared of the truth knowing both my mom’s parents had died with dementia. We didn’t want to face the unknown so maybe if we ignored it, it wouldn’t be reality.
But at some point it becomes unavoidable. Although my parents lived states away, my immediate family would spend extended amounts of time with my parents when we visited and we could see mom’s mental changes easier than some family members who lived closer geographically and had shorter visits with mom. Her social graces could cover for shorter interactions.
I remember when my dad shared with my husband and me his frustration about mom and the fact they fought all the time. They were two of the most “in love” people you could find. Throughout their lives they had worked successfully as a team, raising a family and running a family business. So when my dad shared his frustration, we told my dad we believed that the reason they were fighting all the time was because mom was showing the symptoms of dementia. This broke dad’s heart but it also fostered more understanding in their lives and dad talked to the doctor about mom’s symptoms.
Unfortunately, dad died about six weeks after we told him about what we thought mom’s symptoms meant. I believe he died of a broken heart and didn’t want to see the love of his life go through this disease progression. With the death of my dad and all the changes that caused, mom’s formal diagnosis of Mild Cognitive Impairment didn’t happen until at least a year later.
Mom spent the next several years bouncing from my brother’s home in upstate New York to my home in North Carolina, to my sisters’ homes in either New York or New Jersey. Her symptoms were getting significantly worse and finally I got her into Duke to be evaluated again and this time we were told that she had mild to moderate dementia. The professionals at Duke told me that it was extremely important to have consistency in her life and one of the worse things we could do for her was to bounce her from home to home. My mom and dad were both very clear that they never wanted to go into a nursing home. So what were we to do?
Eventually we had to place mom in a secured assisted living community in upstate New York in order to keep her safe, get her the care she needed but also for the sanity and health of our families. She had gotten physical and hit one grandson and was no longer welcome at my brother’s home. My daughter was dealing with health issues that when we look back we realize that her Celiac disease, which is an auto-immune disease, may have been triggered by the stress of having my mom living with us. My mom eventually moved to a skilled nursing home and passed away with me by her side.
When she died in 2013, I felt that I could re-enter the work force after having left it just prior to when my father-in-law was diagnosed with Alzheimer’s disease in 2006. So for seven years I had lived and breathed caring for those living with dementia. My husband suggested that I should work with seniors because I seemed to have a gift for it. I spent a year of private caregiving for friends and family members of friends until I stumbled upon a job planning and running activities in a secure dementia unit in Cary. I loved the 4½ years working with the residents and their families before I came to the Chatham County Council on Aging.
What is a “Dementia Friendly Community”?
According to Dementia Friendly America, a Dementia Friendly Community (“DFC”) is a village, town, city or county taking action to ensure people living with dementia can live independently for as long as possible. It’s a place where people living with dementia and their care partners will be able to engage in a variety of activities, be supported in these activities and feel accepted and not marginalized. It’s also a place where every part of the community plays a role and works together to create a dementia friendly culture.
As an example, many restaurants and businesses are children-friendly. When a family goes to a restaurant, they are given a “kid’s menu;” they may be given a booster seat to use; there may be a special area of the restaurant for families to sit; and there may be a diaper changing station in at least one of the rest rooms. Or when the family goes to the bank, church or other business, there may be a selection of toys or coloring activities for the children.
On the other hand when someone living with dementia goes into a restaurant, they can get indecisive or overwhelmed by the many options on the menu, even if they have been to the same restaurant many times. The wrong response from the servers could make the person living with dementia upset, more confused or even angry.
What if this happened in a Dementia Friendly business which has trained its staff in dementia friendly skills? The servers would know to smile, look at the person at eye level, be patient and narrow down the choices to two or three at a time until as a team they could find what the guest wanted to eat. Maybe the restaurant has a menu with pictures of the entrees that is easier to understand. If the person living with dementia needs caregiver assistance in the bathroom, it is more customer-friendly if the restaurant has a “family restroom” that is available for the caregiver to assist the person living with dementia.
When you compare the special skills to handle these two types of group, the cultural disconnect becomes obvious. When the child and the parent go into these places in the community, they feel welcome, supported and understood. There is now a cultural norm at these public places that help make the interaction between families with small children and the public place successful. Don’t people living with dementia and their caregivers deserve the same effective type of support? The difference is awareness and training on skills and tools for successful interactions with people living with dementia in our community. That’s where a Dementia Friendly initiative helps fill the void.
What different sectors of the community can play a role in the DFC?
Every part of the community plays a role in supporting people living with dementia and their family and care partners. Dementia Friendly America identifies the following sectors as all having a vital role: businesses, banks and financial services, neighbors and community members, emergency planners and first responders, transportation, housing and public spaces, legal and advanced planning services, memory loss supports and services, independent living communities and care throughout the continuum.
In other words, all the people and places that any senior interacts with in normal life are people and entities that could play a role in a Dementia Friendly Community. This includes healthcare facilities, grocery stores, government offices, banks, legal offices, restaurants, merchandise stores and the list goes on.
We are blessed that some businesses in Chatham County are already doing things in a Dementia Friendly manner. For instance, for the last four years, Virlie’s Grill has hosted the Chatham County Council on Aging Caregiver Appreciation Annual Dinner in February. On this night, they provide a staff and an environment that makes the person living with dementia and their caregiver feel welcome, understood and accepted. It is clear that the staff makes the extra effort to engage the person living with dementia in conversation and feel like they are a special guest. This past year the Donaldson Funeral Home sponsored this event financially so that the caregivers who already feel so much stress didn’t have to worry about the cost of the meal.
In late June, I spoke at the Chamber of Commerce Lunch & Learn program and devoted my presentation to dementia. I discussed how a Dementia Friendly Community could benefit the residents and businesses of Chatham County, and how to go forward.
How would Chatham County benefit from being designated “Dementia Friendly”?
First and foremost when someone develops dementia, the disease affects not just them. It affects everyone with whom they come in contact. So family, friends and all the professionals with whom they deal day in and day out are affected.
A person living with dementia usually realizes something isn’t right but can’t figure out what is going on and this can make them feel anxious. People around them also notice that the person is not acting like themselves and may not understand the cause. They start treating the person living with dementia differently, and this can cause more anxiety for everyone. If family relationships are strained, the family member may think that the person living with dementia-like symptoms is intentionally trying to irritate them, when in reality the person is just very confused and frustrated because their brain is not working the way it used to. Thought processes and being able to verbalize complete thoughts become increasingly difficult for people living with dementia. It may take years for this person to be properly diagnosed and this delay prevents them from receiving the support they need to thrive.
Relationships with family and friends can suffer even more if people don’t realize that there is a medical reason for their behavior. Family members can become “embarrassed” by their loved one’s behavior. This is one of the reasons why the person living with dementia and their caregiver can become isolated. Isolation can cause dementia to progress faster and can lead to emotional and physical decline not just for the person living with dementia but also for their caregiver. Caregiver burnout is a big issue in our society.
In contrast to this situation, imagine if my mom had lived in a Dementia Friendly Community in the early stages of dementia.
Here are some of the characteristics of this type of community and the positive effect it can have.
• In a Dementia Friendly Community, there is broad awareness and recognition of the signs of dementia and how to communicate with people living with dementia. Consider my mom’s example. My extended family and mom’s friends may not have had any experience with dementia. But in a Dementia Friendly Community, much effort is put into creating awareness and educating people about the disease and its symptoms and how to successfully support someone living with dementia and their caregiver. In this scenario, someone in the Dementia Friendly Community could have recognized the signs and symptoms and could have helped my mom and family understand the situation and what resources were available in the community. They could have encouraged mom and dad to go to the doctor to have her symptoms evaluated. When my mom couldn’t order from a menu any longer, the server may also have been trained with the skills to successfully communicate with my mom in a manner to maintain her dignity. Maybe the server would remember what mom usually ordered or gave her only a two or three choices until mom could choose. Or if mom got frustrated when they brought her meal to the table and she didn’t remember ordering it, the staff could remember the training and stay calm, apologize that they misunderstood the order, step away from the table with the meal and re-approach with her meal in a couple of minutes.
• The Dementia Friendly Community would allow people living with dementia to go about their daily activities, have a voice and make decisions, and contribute to community life for as long as possible with understanding, respect and support from their care partners and other community members. Don’t we all want to be in charge of our own lives for as long as possible and make our own decisions? Many people living with dementia resent losing control of their lives and having someone else take over making decisions for them. Losing independence can bring anger out of a person who has never shown anger with a loved one before. As the disease progresses, the disease robs them of their ability to communicate clearly and they no longer have some of their filters that would stop them from saying something they were thinking. Knowing when to step in to assist someone or preventing them from doing something that is dangerous is not easy. After mom had a car accident while she was staying at my home, I had to be the one to tell her that she couldn’t drive anymore. This resulted in a string of profanities sent my way that mom would have never said to me before she had the disease. I understand that it was the disease talking and while it hurt, I knew this was the right decision for her.
• A Dementia Friendly Community would promote an environment where people living with dementia can live safely and be as independent as possible. This setting would be one that promotes physical, mental, intellectual, emotional, social and spiritual wellness. This can be significantly cheaper and more comforting in their own home as long as they get the right support structure. As the disease progresses, access to affordable home care or adult day care can keep someone living at home longer and can be more cost effective than assisted living. Still, it is important to realize that placement in a facility that is dementia friendly as well may sometimes be necessary.
• A Dementia Friendly Community could provide people living with dementia-like symptoms accurate and timely assessment and diagnosis followed by optimal treatment, support and care. In my mom’s case, an earlier, accurate diagnosis could have helped my mom and dad face this disease better together. Also, not all dementia-like symptoms are caused by dementia and a medical professional in a Dementia Friendly Community would be able to distinguish the difference between dementia and other conditions that can cause dementia-like symptoms. Urinary tract infections (UTIs) and thyroid disorders are two examples of diagnoses that can exhibit dementia-like symptoms. UTIs can cause confusion and mood changes. Thyroid disorders can cause problems with recall and the ability to concentrate. So recognizing the symptoms and getting an accurate diagnosis and treatment plan are crucial.
• A Dementia Friendly Community would provide people living with dementia and their families, friends, and care partners easy access to supportive options, information and resources, such as education on disease process, self-care, and providing care. Chatham County has started to embrace this issue as part of the 2018-2023 Chatham County Aging Plan. The Council on Aging is spearheading a free respite program by joining with the faith community so services are spread throughout Chatham County. There’s also a group of 18 Chatham County volunteers who have begun training to become Community Ambassadors who are to help the Chatham County Council on Aging and partners spread the word about services, programs, and other vital news.
• Last but not least, in a Dementia Friendly Community, resources and support are available and accessible to all people regardless of where they live, their cultural background, or their economic status. A big emphasis of the Chatham County Aging Plan is a focus on equity of available services regardless of which part of the county someone lives in, their cultural background or their economic status.
What are other communities nearby that have earned the distinction of “Dementia Friendly” or are in the process?
North Carolina communities that have been recognized as “Dementia Friendly” include Orange County, Wake Forest, The Outer Banks and Cary. Each of these communities have businesses which have completed “Dementia Friendly” training and have demonstrated their desire and ability to treat the community in Dementia Friendly way and these businesses display a dementia friendly logo. This helps community members know which establishments can support them in their dementia journey. In our area, UNC Hospital is using the Outer Banks Hospital dementia friendly model toward making UNC hospitals “Dementia Friendly”.
What has to happen in order for Chatham to get the Dementia Friendly Community designation? What steps, what changes, how much time will it take?
To build on the existing dementia friendly activities already in place in Chatham County, Dementia Friendly America (“DFA”) suggests convening a team of community leaders and members, called champions, to understand dementia and its implications for Chatham County.
The champions would determine community readiness to proceed and build an Action Team. The Action Team would drive the efforts toward becoming Dementia Friendly Chatham. Action Team Members are key community leaders and stakeholders who represent a variety of sectors and are interested in leading the community to become dementia friendly. Action Team members may include people living with dementia, their family and care partners. Further community involvement is suggested through creating a Community Engagement Team. This team would help complete the actual assessment of current strengths and gaps in Chatham County. The Action Team would then look at the results from this assessment and determine what Dementia Friendly Chatham County really looks like and what steps need to be taken to get there.
The Dementia Friendly action plan that includes these steps looks different for every community because of the uniqueness of each community. Thus the amount of time it takes to earn the Dementia Friendly distinction depends on the approach that the team determines is best for Chatham County and its residents.
The purpose of this viewpoint and the sharing of my personal experience are to create greater awareness of this important issue within our community. It is one that will surely grow in importance with the aging of our population. If you might be interested in becoming a “Champion” for this issue, please contact me at Jackie.Green@chathamcoa.org or call me at 919-542-4512. We need people within our community to drive this initiative to support those living with dementia and their caregivers.
In the meantime, what can someone do to support someone living with dementia?
You can be a friend to someone living with dementia by staying in touch with your friends who may be developing dementia, be aware of their needs and offer assistance to them. Go ahead and smile and say hello instead of avoiding a person living with dementia. Don’t be afraid to start a conversation with a person living with dementia.
Lastly, provide opportunity for people living with dementia to be included in your community. Please don’t ignore them. Help find a meaningful way to include them. Someday it may be you or your loved one who may need someone to extend this kind of kindness and understanding. I love meeting those living with dementia where they are. They may only have this moment because they can’t remember what came before and they may not be able to ponder what is to come. But a smile in this moment goes a long way to help them realize that they are not invisible — they are loved and valued.