Thirty caregivers (mean age = 67 y ± 11.6, 87% women) were interviewed. Mean distance from the VA medical center was 53.4 miles (SD = 34.4). All caregivers (100%) reported helping PLWD with instrumental activities of daily living (IADL) and 67% reported helping PLWD with at least one activity of daily living (ADL). Table 1 describes the characteristics of the study participants. Caregivers’ experiences were similar when discussing dementia care regardless of geographical area. The top three words to describe their tele-dementia experience were helpful, easy, and convenient and can be seen in Fig. 1.

Table 1 Characteristics of Study Participants (n = 30)Figure 1

Caregiver experience of tele-dementia care at the VA: created from “3 words to describe your experience”.

Five primary themes related to the caregiver’s experiences with obtaining dementia specialty care were derived. Results are presented below and include selected representative quotations. The section headings below the themes are subthemes.

Theme 1: Tele-dementia Care Avoids Routine Disruption and Pre-visit StressLimited Preparation for Visits and Immediate Return to Routine

Multiple caregivers described how they appreciated the limited preparation needed for a tele-dementia visit, including immediate return to routine post visit completion (Table 2, 1.1).

Table 2 Representative QuotesPre-visit Stress Experienced by Caregivers and PLWD

In the absence of tele-dementia care, caregivers described needing many hours for visit preparation since the PLWD may not want to get ready and leave the home according to the planned schedule, or may have stress around changes in routine when they cannot control the activities of the day (Table 2, 1.2, 1.3, 1.4). A caregiver stated “it makes him decline actually… I wouldn’t even tell him up to the minute we were leaving because he would be so anxious” (Table 2, 1.5).

Even When Technical Issues Are Present, an Alternative to In-person Care Is Beneficial

Caregivers noted occasional technical issues that some participants faced (e.g., internet connection, speed of internet, grainy quality of the video). Despite this, participants interviewed still felt an alternative to in-person visits was beneficial (Table 2, 1.6).

Theme 2: Transportation Barriers to In-person Visits Include Not Only Travel Logistics, But Navigating the Sequelae of PLWD’s Dementia and Other Comorbid Medical Conditions

Caregivers described that transportation included exiting the house, entering the car safely, driving to the facility, parking, exiting the car, and walking to the building and into the clinic.

Cognitive Barriers to Transportation: Attention and Executive Function Challenges

Many caregivers described their PLWD as having an inability to follow instructions. Caregivers described opening their front door and having the person with dementia elope or refuse to get in the car. They also described behaviors such as locking and unlocking doors (Table 2, 2.1).

Perceptual Disturbances—Hallucinations

Multiple caregivers described auditory and visual hallucinations and delusions present in the PLWD that made staying home and leaving difficult (Table 2. 2.2).

Physical Challenges

Multiple caregivers noted that their PLWD encountered numerous physical challenges including loss of balance, incontinence, hearing and vision loss that made exiting the house and entering the car difficult when trying to access in-person care (Table 2, 2.3).

Emotional, Cognitive, and Physical Challenges Together

One caregiver stated her husband had “…nervousness issues, where he ends up having bowel movements” (Table 2, 2.4). Additionally, several caregivers described their PLWD’s fear and stress in traffic created potentially dangerous driving situations. When in the car, many caregivers experienced stress as some PLWD demonstrated unsafe passenger behaviors that were distracting “he would get so scared in the traffic, I don’t know how I could drive and keep him calm” (Table 2, 2.5). Another confessed she felt “I’m going to have a wreck, just because you’re scaring me!” (Table 2, 2.6). One caregiver takes a bus after PLWD had license suspended so “I don’t have to deal with his arguing and trying to tell me what to do.” (Table 2, 2.7).

Navigating Parking and Walking from Car to Clinic with PLWD Is Challenging

When caregivers arrived at the medical center, they could not leave their PLWD unattended, but also struggled physically with getting them from the parking spot to the facility. One caregiver described “Drop him off, get him in, get him sat down, and then I go back to the car, go across the street with my vehicle, park in the parking lot, come flying back across as fast as I can” (Table 2, 2.8).

Theme 3: Tele-dementia Care Saves Time and Money and Improves Access to Specialists

When asked how much time saved, answers varied widely. Caregivers reported they saved 2.6 h ± 1.5 h (range: 0.5 to 6 h) of travel time.

Avoiding Travel Saves Money

Caregivers reported that avoiding travel-related costs like gas saves money, and the hassle of filing for travel reimbursement (Table 2, 3.1).

Accessing Dementia Specialty Care Is Hard and Older Adults Can Benefit from Specialized Medical Professionals

One caregiver described difficulty finding Lewy body dementia specialists in her geographical area, “We have nobody in our area… We don’t even have a nursing home or memory care.” (Table 2, 3.2). Another caregiver appreciated the geriatrics specialty care for dementia “Senior citizens have special needs and things that are happening to them just because of their age, and they need a doctor that specializes in that area.” (Table 2, 3.3).

Avoiding COVID Exposure

A few caregivers appreciated the avoidance of COVID-19 exposure “He doesn’t understand the COVID procedures…he’s had his shot and he wears a mask, so his main problem is the hands and getting too close to others.” (Table 2, 3.4).

Theme 4: Tele-dementia Facilitated Communication Between Caregiver and Provider Without Hindering Communication Between PLWD and ProviderEven Though Caregivers Like In-person Visits, It Is Easier for Both PLWD and Caregivers to be Heard During Tele-dementia Visits

One caregiver described “the one advantage to doing it on video is that if I can get him to leave the room, then I can actually talk without the interruptions…” (Table 2, 4.1).

“Truth” Telling Is Different for the PLWD and the Caregiver

“Truth” telling seemed to refer to the accuracy of information given by the PLWD to the care provider. For example, the PLWD may mis-remember and report inaccurate information about current state (Table 2, 4.2). Another caregiver expressed appreciation to talk to the provider before or after scheduled visits (Table 2, 4.3).

In-person Communication Is Challenging for PLWD When Providers Are Masking

In the COVID-19 era, masks and face-shields are necessary safeguarding for healthcare professionals, but this too can be problematic for some patients, especially those with sensory impairments like hearing. Although tele-dementia can also be challenging for those with hearing impairment, at times providers may be able to speak over video or telephone without a mask on “It’s difficult to understand anybody with a mask on.” (Table 2, 4.4).

Theme 5: Caregivers Described Ideal Future Dementia Care as a Combination of Virtual and In-Person Modalities with In-home Help, Financial and Medical Support, and Dementia-Sensitive Caregiver AccessCaregivers Hope to Use Tele-dementia Services Beyond the Pandemic

Caregivers hope to continue using tele-dementia services beyond the pandemic due to the convenience, especially as the disease advances and getting out of the home becomes increasingly difficult. However, they did not want to eliminate in-person visits completely “I’d take a mixture.” (Table 2, 5.1).

Caregivers Feel Calmer and with Less Stress During Tele-dementia Visits

One caregiver reflected upon the way she shows up to tele-dementia visits versus in-person visits. “I kind of tend to think that I’m more calm virtually.” (Table 2, 5.2).

Caregivers Described What an Ideal Future State of Dementia Care Would Be Like, Both for Their PLWD and for Caregivers

Caregivers discussed how they had dreamt about this and provided comments about an ideal future state. “In the ideal world? More caring.” (Table 2, 5.3). They also described respite care coming “at least every other day” (Table 2, 5.4) and wishing there was a “handyman type of home health aide, that wouldn’t mind being outside with him, like raking leaves or shoveling snow” (Table 2, 5.5). They also described hope for financial assistance for “middle class” caregivers “Because a lot of us don’t want to put our loved one in a home and don’t want to have to give up everything to do that.” (Table 2, 5.6).

Words Describing Caregivers’ Tele-dementia Experiences

Satisfaction with the tele-dementia services at the VA was expressed (m = 8.6; SD = 1.9) on the 1 to 10 scale. A word cloud was generated from caregiver responses regarding how they would describe their experience. The more frequently a word was used by the caregivers interviewed, the larger the word’s size was in the corresponding graphic (Fig. 1).

Our findings are illustrated in Fig. 2.

Figure 2

Summary of themes and subthemes.