Lindsay was at a family gathering with her mother, who she was visiting in Virginia Beach. Her favorite uncle, Fred, who she recently found out was diagnosed with Alzheimer’s, was there helping out in the kitchen. When she saw him for the first time since his diagnosis, she got a pit in her stomach. She didn’t know how to approach him, if he would remember her, or if he would act differently towards her. She retreated to the other room as long as she could and avoided him for the duration of the event.
On the ride home, Lindsay’s mother mentioned that her uncle asked about her. He wondered why she didn’t even say hello, when they used to be so close. Lindsay confided in her mother that she was apprehensive, because she didn’t know what to expect when she talked to him. What if he didn’t remember her? What if he was not himself?
Stan Goldberg, Ph.D., spent nearly a decade observing people with Alzheimer’s and their families. He said that in many instances, those in the early stages of the disease would tell him that their friends and loved ones would treat them as if they had a contagious disease. Sometimes, they would even stop calling or coming around.
Here are some examples of the reactions someone in the early stages of Alzheimer’s may experience, according to the Alzheimer’s Association:
• Testing friendships: Friends may refuse to believe your diagnosis or withdraw from your life, leaving a feeling of abandonment or isolation.
• Relationships with family may change. Family members may not want to talk about the disease, perceive you as having little or no quality of life, or may avoid interacting with you.
• People think you are incapable of making decisions for yourself: Others may approach your care partner to ask about you rather than asking you directly how you are doing.
• You may get turned off to other people’s help: The reaction of some friends and family to your diagnosis may prevent you from seeking help from others.
In many instances, the misconception among friends and family members who treat their loved ones in this way, is that the person with Alzheimer’s:
• stepped back into their childhood;
• possessed the mind of a developmentally delayed child; or
• became psychotic.
None of these things are typically true, yet as a society, we often treat those with dementia as if they are.
Fighting Alzheimer’s Stigma
Imagine how your life would be transformed if significant parts of your identify disappeared–sometimes quickly, and at other times slowly.
Life is full of choices. We can stay away from those with Alzheimer’s, either out of ignorance or fear of what we might eventually become, or we can choose to put ourselves in the place of someone with the disease.
Even if you choose to stay away, eventually, you will no longer truly be able to run or hide from Alzheimer’s or other forms of dementia. With the disease being so prevalent, if you don’t know someone with Alzheimer’s or another form of dementia, you likely will.
Don’t be afraid. Be aware! These are some things to consider the next time you interact with a person who has or you suspect has dementia:
• Be Patient. It may take longer to process information.
• Remember, memories are not willingly lost. There will be things someone with dementia won’t remember, both recent and distant. Not remembering has nothing to do with not trying.
• Accept change. Dementia is progressive. The person’s abilities today may be different tomorrow.
• Offer help to the person. There are few things more frightening then being disorientated, such as being a few blocks away from your house and not knowing how to get home. When you see someone who is obviously confused, don’t be afraid to offer help.
• Offer help to the caregiver. Unless someone has been a long-term caregiver, they have no idea of the effort it takes. Offer to help. Anything will be appreciated. Knowing that people care is a blessing to the person receiving the offer.
These are some things you can do to dispel misconceptions about Alzheimer’s:
• Engage others in discussions about Alzheimer’s disease and the need for prevention, better treatment and an eventual cure. Engage with others online using Alzheimer’s message boards and discussion forums, or in person but attending local support groups.
• Communicate the facts. Share accurate information to clear up any misconceptions about the disease. Whether a pamphlet or link to online content, offer information to help people better understand Alzheimer’s disease. Learn the facts about Alzheimer’s and find an education program near you.
• Don’t be discouraged by other’s denial or fear of the disease. Use this as an education opportunity.
• Learn how you can take action in the fight against Alzheimer’s.
• Enjoy their presence while you still can and offer them the support and compassion you would want if it was you who were in the same situation.
Do You Have a Loved One with Alzheimer’s or Another Form of Dementia?
Putting legal, financial and end-of-life plans in place is one of the most important steps you can take, especially while your loved one still has the capacity to make decisions for him or herself.
Here at the Farr Law Firm, we are dedicated to easing the burden on those suffering from dementia and their loved ones. We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. Please call us whenever you are ready to make an appointment for a consultation:
Fairfax Alzheimer’s Planning: 703-691-1888
Fredericksburg Alzheimer’s Planning: 540-479-1435
Rockville Alzheimer’s Planning: 301-519-8041
DC Alzheimer’s Planning: 202-587-2797
About Evan H Farr, CELA, CAP
