Table 1 Themes and topics related to dementia caregiving (N = 44,527).
From: Pre- and post- COVID-19 trends related to dementia caregiving on Twitter
Theme and topic (keywords) | Sample tweets | Number of tweets, n (%)1 |
|---|---|---|
Theme 1: Challenges of caregiving in dementia | ||
Topic 1: Personal recounts of challenges in dementia caregiving (mom, mother, dad, father, I, my, parents, wife, carers, caregivers, support, job, year, died, journey) | “As a #caregiver, some days I felt like I was sinking. It took me awhile to realize it’s okay to seek help and support. #Dementia.” “#Caregiver she continues to descend. Clarity, recognition are rare. Anger, disorientation the norm. I know where this ends. Just want to make her journey as loving and comfortable as possible. The occasional smile makes it worthwhile. I miss my wife.” | 29,770 (66.9) |
Topic 2: Caregivers’ worries that the person with dementia would contract COVID-19 (COVID, COVID-19, vaccine, positive result, virus, spread, hospital, tested, signs, situation, symptoms, swab, exposure, worry, death) | “My worry is for my loved ones. I’m carer for my mum who’s 76 and is showing signs of Alzheimers. Trying to keep her safe, and had to tell my sister to stay away as she’s worked in a school, and hadn’t grasped the situation. Mind’s a bit less scrambled now, tho. #copingwithcovid” “My dad has Alzheimer’s, and I worry every day that he’ll get covid from his caregivers, so I can totally understand where you’re coming from” | 1282 (2.9) |
Topic 6: Caregivers resonating with the emotional toll of caregiving as depicting in television programs (episode, watching, watched, mum, video, year, storyline, real, emotional, portrayal) | “I’m impressed with the way GH is playing this storyline about Alzheimers. I am a caregiver of an elderly woman with Alzheimers. One of the most heartbreaking things is to watch someone lose themselves a little at a time.” “The Iron Lady made me cry. As a young carer for someone who suffers from #dementia, it hit me hard.” | 443 (1.0) |
Topic 10: Financial difficulties faced by caregivers (money, need help, use, work, caregiver dad dementia, groceries, caregiver dad, hungry) | “I just need help. I am disabled and also the sole caregiver for my 89yo dad with Alzheimer’s. It’s becoming expensive and need help. Also I am 5 months into recovery and go daily to treatment. My truck is on its last leg. Please help if you can.” “I am truly needing help! Just got out of the hospital last night and didn’t have any money for dinner for me and my dad (I’m his caregiver and he has dementia). No money in the bank and we need some help with groceries. I’m such a failure.” | 233 (0.5) |
Theme 2: Strategies to inspire caregivers | ||
Topic 7: Caregivers sharing their experience of using music to connect with the person with dementia (music, song, singing, songs, sing, dance, play, living dementia, used, mum) | “I used to be a dementia carer. I saw first hand how much music and singing meant to the people I cared for. It’s amazing what you and the choir are doing.” “It’s so good to see my husband remembering the words to songs. He doesn’t speak much now yet he can sing every word. A carer of someone living with dementia. Singing has a great effect on those living with dementia. Find a local group #DAW2019” | 449 (1.0) |
Topic 8: Caregivers inspiring others by sharing their experience in books (book, read, books, reading, journey, wrote, writing, author, memoir, amazon) | “Thank you. :) This is mine, I was a live in dementia carer for nearly 12 years. My book contains some of the recipes I tempted Mum to eat, plus some hacks I learned along the way” “My book is about my caregiving journey with my dad and dog, who both had dementia. A woman stated that it was unrealistic (?!) and hers was “a lot harder than that.“I smiled sympathetically and said “Each patient and each caregiver’s journey is different. I honor yours.“” | 389 (0.9) |
Topic 9: Caregivers inspiring others by sharing their experience in films (film, carers sharing, carers sharing experiences, sharing experiences, mum dementia, experiences, dementia film, film carers, mum dementia film, sharing) | “This is such a compelling short film that gives such an accurate insight into the life of a carer. These women are incredible. Dementia care: It’s not dementia killing me, it’s exhaustion” “Signed, this film has hit me hard, dad had #Alzheimers and it took it’s toll on mum his main carer, now I’m a carer for my husband with #MND; the similarities are endless - help is needed to help those caring for others to stop them from going under” | 256 (0.6) |
Theme 3: Dementia-related stigmatization | ||
Topic 3: Using dementia as a means to devalue others (signs, should, has Alzheimer’s, has dementia, needs caregiver, know, think, dementia caregiver) | “You really need to rethink saying he is not senile. I have been caregiver to people with dementia for 15 years. Anybody that listens and looks at him without bias knows he has dementia.” “Some medical conditions should automatically disqualify a person from the job. Dementia is one. I’m a caregiver, too. And I’ve seen the drastic changes that happen in 4 years. He will not stay at this stage if this is, really, his diagnosis. It gets way harder fast.” | 791 (1.8) |
Topic 4: Using dementia as a means to devalue others, in reference to Joe Biden (biden, joe, joe biden, signs, biden dementia) | “Biden has cognitive degrading health issues. Senile. Suffering from early dementia. I know because I’m a caregiver for this group of humans.” “I am a Caregiver for Dementia patients and Biden def has the beginnings of Dementia and the fact that 81 M people voted this guy in is mind boggling! A demented old man running America, they are the one’s who need their heads examined!” | 505 (1.1) |
Topic 5: Using dementia as a means to devalue others, in reference to Donald Trump (Trump, president, diagnosed, patient, trump dementia, Alzheimer’s, dementia, obvious signs) | “Sorry, I disagree. As a caregiver for many years Trump has mid-stage dementia so he will not be able to run for anything. In fact he has frontal lobe dementia, and you can definitely notice by the way he stands” “Dear Resistors: Take heart. Trump is diseased. He is crumbling. I took care of my mama w/Alzheimer’s, & I see many parallels. Sure, I’m no MD, but as a caregiver on the front lines for many years I can tell U this Trump ain’t making it to 2020.” | 458 (1.0) |
