Dementia, Alzheimer’s Experience: Poem, Virtual Dementia Tour Video 2:20

Do you ever wonder what it feels like to have dementia? I do. As a hospice volunteer in Detroit nursing homes, I have spent considerable time with residents who have dementia. This poem describes how I think many of them feel.

Pieces of Our Minds

On the border, on the brink,

we shiver like quivering tears

swollen to fullness with distress,

reluctant to spill an excess. 

Strapped in delusions

wondrous and weird, we ride

roller coasters of reality

through joy and fear.

On the brim, on the rim,

like balls circling in frustration,

we scramble for thoughts

lost in nets of uncertainty.

Invaded by memories,

peeping, creeping, weeping,

we laugh and cry to the

rhythm of nostalgia.

On the fringe, on the edge,   

changing, adjusting, impacting,

we crave compassion in our

 search for society’s sanctuary. 

© Frances Shani Parker

For a more personal experience of what it’s like to have dementia, a sensitivity training simulation can be very beneficial. The Virtual Dementia Tour®  is an interactive learning experience designed to help those caring for people with Alzheimer's disease or other forms of dementia. The tour includes five tasks to complete in the manner that a person with dementia would experience them.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Caregiving with Sensitivity: Semi-Sensory Deprivation and The Virtual Dementia Tour (Video 3:04 mins.)

I have been a big fan of semi-sensory deprivation training for some time. For example, lack of eye care for nursing home residents is widespread in America and greatly impacts these residents’ quality of life. It’s only logical that if volunteer participants could wear glasses or goggles that have lenses smeared, so their vision is blurry, they can arrive at a better understanding of what patients with impaired vision experience. Simulations impairing speech, smell, taste, hearing, walking, talking, eating, touching, etc. help others really experience what patients are going through on a daily basis, and they provide great discussion. Nursing homes, hospitals, and medical schools are supportive of providing these experiences.

Because family members care for most patients with dementia, it is important that family caregivers develop more sensitivity to patients’ experiences. One example of training to improve their sensitivity is The Virtual Dementia Tour. This training developed by P.K. Beville for Second Wind Dreams “helps sensitize families to the needs of their loved ones” by helping them see, feel, and hear in ways similar to the experiences of an elderly person with dementia. Second Wind Dreams® is a national non-profit organization based in metro Atlanta.

In this video about the Virtual Dementia Tour, participants perform everyday tasks such as matching socks while wearing the following:

1) Dried corn in their shoes to simulate arthritis
2) Gloves with taped fingers to simulate declining age
3) Goggles to simulate impaired vision
4) Headphones to simulate background noise distractions that interfere with patients’ focus

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
Hospice and Nursing Homes Blog