Living with dementia in the midst of the pandemic

MEMORIES WITH GRANDPA: Reporter Jonathan Pizarro and his grandfather Jess Pizarro before having dementia. The photograph was taken in March 2014 at the Baguio Military Academy, which they visited together. Jonathan Pizarro/The Scoop

Reporter’s Note: My grandfather has been a big part of my life since I was born. Through thick and thin, he has always showed me unconditional love and support. These past few years have been difficult. Dementia has changed my grandfather, however, and the pandemic has worsened his condition.

My experience with him is a large part of why I wanted to write this article. In the researching and interviewing process, I learned things about dementia that I didn’t know before, such as how dementia can abruptly change the personality of a loved one. It helped me make more sense of and understand the changes I saw in my grandfather. I also learned that there are programs that provide help for people with dementia and their families. It also made me more aware that dementia isn’t just something my family is experiencing, it’s a community issue, and there are others out there who are going through the same things we’re facing.

I hope to use what I learn to better support my grandfather and my family as we go through this journey together.

Despite losing his memory, my grandfather continues to do things that make him happy — playing cards, listening to old music, and spending time with his dog. The pandemic has made life more difficult for him, but it will not change who he is and it will not control the direction of our relationship. I love my grandfather, and nothing will change that.

The COVID-19 pandemic has made the world a lonelier place for those afflicted with dementia.

“Many dementia patients already have compounded medical issues. On top of having medical issues, a progressively deteriorating neurological illness like dementia creates an even more complex life,” said Julie Laurente, an Adult Outpatient Social Worker for the Guam Behavioral Health and Wellness Center.

“The already extended social distance measures in place to help deter the spread of COVID-19 has increased detachment from any sense of reality for them. That loneliness is deafening all on its own," she said.

Laurente counsels people who endure challenging family situations, including those who with family members who have dementia. She has seen and dealt with situations where there was extreme abuse and neglect of dementia patients to strong support for those afflicted.

She said loneliness is a harmful consequence from the pandemic that isn’t often talked about, but does have an impact on many people and in particular those suffering from dementia.

Dementia is a decline in mental ability which affects memory, thinking, problem-solving, concentration and perception, according to the GBHWC website. Dementia occurs as a result of the death of brain cells or damage in parts of the brain that deal with our thought processes.

Some forms of dementia, such as Alzheimer's disease, are degenerative. That is, they get worse over time. Other forms of dementia, such as vascular dementia, may be non-degenerative and may not get worse over time.

People with dementia can become confused. Some people with dementia also develop other problems such as depression, GBHWC states. Compounding those challenges with issues that families face during the current pandemic, including anxiety due to loss of a job or concern that a family member may fall ill with COVID-19, can make everyday life particularly rough.

In addition, while social distancing may be one of the most effective tools for preventing the spread of COVID-19, it strips a valuable tool in dealing with dementia.

Without physical interaction and moral support from families, memories begin to fade from diminishing neuroplasticity, Laurente said. Dementia affects the manåmko’, or elderly, and at this juncture in their lives, a family is of utmost importance because of the memories created.

Laurente said to help those afflicted “we need to increase programs that respite caregivers.” She believes that increasing programs and activities that keep the patients busy will hopefully slow deterioration, and that there is a need to help the manåmko’ afflicted by dementia.

Changes with COVID-19

Rhoda Orallo, a Health Services of the Pacific social worker, said there are support groups for families who care for a loved one with dementia.

Orallo helps facilitate a support group for caregivers of persons with dementia. Isa Psychological Services Center at the University of Guam hosts the support groups, which are free.

Orallo said the groups provide an outlet for caregivers to share frustrations as well as coping skills. It’s also an opportunity to share what activities or solutions help them and their loved ones at home – particularly with the current pandemic.

She said dementia patients were able to enjoy going out to the movies or dinner at a local restaurant.

“The pandemic makes it more difficult,” she said, saying it’s a combination of primarily two things, living with masks and other restrictions, as well as the fear of infection.

“Prior to the pandemic, we had dementia individuals who are able to go outside and enjoy going to a movie or eating out at a restaurant without any problems,” she said, saying these outings benefited both the patient and the caregiver.

“During the pandemic, something like wearing a mask is difficult for them to understand, it’s hard for them to comprehend the importance so it makes being out a little harder.”

Orallo said often times, people with dementia are older or have underlying health conditions, both of which make them vulnerable to catching the novel coronavirus, which causes COVID-19.

Not only is the fear of infection present for the dementia patient, it’s also a real concern for the caregiver – even just going to the store can cause added anxiety because they worry about bringing the virus back home with them to their loved one with dementia,” she said.

Orallo added that these stressors can really weigh down on caregivers who are also reluctant to allow others into their homes out of fear that they might inadvertently introduce the novel coronavirus into their home.

“They’re enduring extra stress because they’re afraid and want to protect their loved ones,” she said.

And this is where the caregivers support groups can help to ease some of that stress.

“Caregivers often feel like they carry all this weight. And people don’t always realize that there are others who are experiencing similar situations or … the same exact situation as them,” she said, noting that often times caregivers in the group will share what works to help calm their loved ones or help them personally to destress.

Orallo emphasized that local residents who care for dementia patients have avenues for help, even during the times of COVID-19.

“It may be limited but it’s there,” she said.

She encouraged families to reach out to the support group or to GBHWC.

GBHWC offers a 24-hour hotline at 647-8844.

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