What Dementia is Really Like: The Virtual Tour

Mary is a caregiver for her mother, Charlotte, who is in the early stages of dementia. She has seen her mother’s symptoms of forgetting who family members are, having difficulty communicating and remembering the right words to use, and becoming irrationally suspicious of those around her. She has witnessed her mother forgetting how to turn on the oven one day, and successfully roasting a turkey the next. Mary feels that if she could truly understand what is going on, she could be a better caregiver to her mother.

If a loved one has dementia, you may find certain symptoms frustrating, baffling, and sometimes frightening. But what is it like for a person to forget almost everything he or she ever knew? By asking experts – and people who are themselves in the early stages of dementia – we can get some idea. Here are some things that could help shed some light on dementia behavior:

• Memory loss, the essential dementia symptom, can be anxiety-provoking and frightening for those experiencing it. Whether the person is in the early stages of dementia and very aware of their problems, or in the middle stages, life can feel constantly uncomfortable because nothing is familiar anymore.

We’ve all experienced the frustration of losing our keys right after we had them in our hands. Imagine that frustration, magnified and repeated constantly throughout the day. Imagine a memory completely fading out and fading back at a later time (as in our example with Charlotte and her ability to turn on the oven and roast a turkey).

• Difficulty following conversations/loss of vocabulary: Mary Becklenberg, 62, who suffers from early dementia, describes how words drop out of her vocabulary, although she often covers it up well.  “Sometimes, it really is easier to go along – to laugh and pretend that I know what a person is talking about,” says Becklenberg. “I guess you could say I’m doing it to save face.” As the dementia progresses, and these symptoms worsen, there often comes a point where those with dementia have difficulty articulating even basic needs.  Often times, the best a caregiver can do in these situations is guess.

• Wandering: When a person has dementia, even the house he or she lived in for decades might suddenly become unfamiliar. Confused, he or she may wander to get out and search for a place that is recognizable and feels safe. “Sometimes people who wander from their homes say that they’re trying to go home,” says Beth Kallmyer, MSW, director of client services for the national office of the Alzheimer’s Association in Chicago.” It confuses caregivers, but the person might mean a different home – maybe the home he or she grew up in.” If you have a loved one with dementia who wanders, please read our article on new technology that can prevent you from losing your loved one.

In addition to the symptoms above, people with dementia often feel bored and depressed, experiencing a sense of loss and anxiety, knowing that they have an incurable, degenerative disease. They also may feel fear, anger, and at times, aggression, since even their closest family members seem like strangers to them. They may also feel paranoid at times, thinking completely irrational thoughts, such as someone stealing their wallet. Read more about dementia symptoms on the Alzheimer’s Association website.

Now that you have heard first hand from an expert and someone who has dementia, how can you truly walk in their shoes. The Virtual Dementia Tour® (VDT®) is an interactive learning experience designed to help those caring for someone with Alzheimer’s disease or other dementias to identify with and better understand some of the challenging behaviors someone with Alzheimer’s disease or other dementias might demonstrate.

By walking in their shoes, albeit briefly, we can develop a sense of how we might feel and what might make us more comfortable if we were the ones with dementia.  

Created by P.K. Beville, a specialist in geriatrics, this valuable, easy to follow experiential kit is designed to instill hope in professional and family caregivers, providing them with a tool to move from sympathy to empathy and better understand the behaviors and needs of their loved ones and patients. The VDT® has been used by 500,000 people worldwide, 25 universities, and 16 medical schools to stimulate dementia.

The VDT® can be taken by individuals, in a group, or in a community setting. From start to finish the tour can be completed in less than 30 minutes.

If taken in a community setting, this is what someone would experience:

• Prior to starting the tour, test administrators temporarily alter the participants’ physical, sensory and cognitive abilities with props and circumstances to simulate changes associated with aging and dementia.

• Participants are then given instructions to complete 5 simple tasks during their 10 minute tour while their behavior and responses are observed.

• After experiencing the tour, participants are encouraged to share their reactions to and their feelings about the tour during a debrief session.

• Finally, participants are given reference materials and ideas on what we can do to create a better environment for those we care for who suffer from Alzheimer’s disease or other dementias.

Find out more about the Virtual Dementia Tour®.

Persons with dementia and their families face special legal and financial needs. At The Fairfax and Fredericksburg Dementia Planning Law Firm of Evan H. Farr, P.C., we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones.  If you have a loved one who is suffering from dementia, we can help you prepare for your future financial and long-term care needs.  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. If you have not done Long-Term Care Planning, Estate Planning or Incapacity Planning (or had your Planning documents reviewed in the past several years), or if you have a loved one, such as your mother-in-law, who is nearing the need for long-term care or already receiving long-term care, call us at 703-691-1888 in Fairfax or 540-479-1435 in Fredericksburg to make an appointment for a consultation.

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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