Abstract
Currently, there is not enough time or staff in the physician’s office to provide education about Alzheimer’s disease for newly diagnosed patients and their family members. The Alzheimer’s Association Cleveland Area Chapter has implemented a novel approach for individuals to connect to helpful information about Alzheimer’s disease and related dementias while at the physician’s office. This project is being piloted at two memory assessment clinics of The Cleveland Clinic as a way to give assessment center staff the opportunity to connect families right away with the free support services available at the Association.
Keywords: Alzheimer’s dementia, caregiver, education, support service, audiovisual, Alzheimer’s Association
Introduction
Alzheimer’s disease is the only cause of death among the top 10 in the United States that cannot be prevented, cured, or even slowed down. At current practice settings, with increasing number of patients, there is not enough time or staff to provide education about Alzheimer’s disease, especially for those recently diagnosed and their family members at the physician’s office.
Receiving a diagnosis of Alzheimer’s can be life changing. Also, caring for a loved one with Alzheimer’s disease can be a challenging job, especially as the disease progresses. Preparing for life with Alzheimer’s disease starts with education. After receiving a diagnosis, it is normal to leave the doctor’s office with an insufficient understanding of the true nature of the diagnosis and the disease. Patients and their caregivers are usually concerned about what to expect as the disease progresses and how they can maintain quality of life and independence for as long as possible. Caregivers usually rely on their doctor or other health-care professionals for information about the disease. Psychosocial interventions providing support, education, and counseling to patients and caregivers can improve the quality of life of those afflicted as well as their families. 1 Although there are abundant sources of information on the Internet, it is up to medical staff to point patients and the family in the right direction. Furthermore, since there is currently no cure and the efficacy of existing treatments does not extend to all patients, 2 connecting patients and their family members to support programs are one of the interventions that can be helpful. As a result, the role of an organization like the Alzheimer’s Association can be particularly important for the patient, their family members, and health-care providers.
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support, and the largest private funder of Alzheimer’s research. 3 The Alzheimer’s Association comprises more than 70 chapters across the country and offers a wide range of information, free programs, and support services. Their professionally staffed helpline offers information and advice to more than 300 000 callers each year.
The Alzheimer’s Association Cleveland Area Chapter has maintained ongoing efforts to integrate innovative support services alongside traditional primary care for people with dementia. For several years, the chapter collaborated with area assessment center programs in northeast Ohio by placing an Association staff person at the center to be called upon by the medical team as a resource to patients and their families who were interested in learning more about the disease and available services. However, it was challenging to create an efficient staff model with down time between patients, staff only available to be at each center 1 day a week and reimbursable mileage costs to and from the centers. The Cleveland Area Chapter was looking for an alternative way to replicate the personal connection, increase efficiency, and reduce costs and staff time away from the office. The solution was the creation of ALZ i-Connect, a unique approach to connect individuals who have just received a diagnosis to important information about memory loss and the Association’s free services before they even leave their physician’s office.
Methods
This project is being piloted at 2 memory assessment clinics of The Cleveland Clinic as a way to give assessment center staff the opportunity to connect families right away with the free support services available at the Association. The Alzheimer’s Association chapter provides a TV with camera to the site location, which is then connected to the center’s Internet service. Assessment Center staff receive brief training from the Association on the use of the equipment and how to easily connect their patients to the Alz i-connect service via Skype (Figure 1). The assessment center staffs offer the opportunity for an individual to speak to someone at the Association “in person” through the use of Skype technology and initiate the call immediately following the diagnosis by the doctor or during the follow-up appointment.
Figure 1.
Flowchart displaying connection between memory assessment clinics and helpline staff of Alzheimer’s Association area chapters through Internet at physicians’ office.
The staff who are involved in ALZ i-Connect are the helpline staff and care consultants at the Alzheimer’s Association. Staff log in to Skype when they arrive at the office and make sure that they are available to take Skype calls when they are not involved with other clients in the office. Chapter staff credentials range from having earned a bachelor’s or master’s degree in social work, counseling, or related degree. The skill level for this type of interaction is not specifically clinical in nature, but as an information source, providing the patient and family a welcoming and concerned person to introduce them to the services and supports available through the Association. This initial connection creates an important first impression and relieves the burden on the patient or family from having to make the first call. Clients appreciate the Association staff reaching out to them especially during this often confusing and stressful time following a diagnosis.
It is important to note that this initial connection is meant to be an introduction. During the Skype call, staff will coordinate a follow-up time to speak (ideally within 3-7 days) with the patient or family members to talk in further detail about the initial information shared, answer new questions, and engage them in clinical services as needed.
ALZ i-Connect has been able to create increased efficiency for Alzheimer’s Association staff and a reduction in overall costs from the initial model of having Association staff alternating days at assessment centers. The only costs incurred by the chapter have been the purchase of several flat screen TVs and cameras which the Association was able to fund in lieu of mileage costs previously spent.
Results
Presented here are survey results after the first year of the program. 59 surveys were sent to participants to assess their experience with this novel approach to communicating with trained Alzheimer’s Association staff. The results reflect the responses from participants that replied to surveys (n = 11). 81% of responders reported feeling comfortable during the skype session. 90% found that the presented information was clear and helpful. 81% reported this audiovisual call was beneficial. 72% thought that the ALZ i-connect call was an efficient way of communicating and gathering information from the Association, while only 18% would have preferred a different means of communication with the association.
Table 1.
ALZ i-Connect Users’ (July 1, 2013, to June 30, 2014) Demographic Data.a
| Gender (N = 63) | Age (n = 17) | Race/Ethnicity (N = 63) | Education (n = 9) |
|---|---|---|---|
| Female = 41 | Range: 37-86 | Caucasian = 55 | High school = 4 |
| Male = 22 | Mean: 63.24 years | African American = 6 | Some college = 3 |
| Chinese = 1 | Bachelor = 1 | ||
| Puerto Rican = 1 | Post graduate = 1 |
aN = 63 caregivers or patients.
Table 2.
ALZ i-Connect Participant Evaluation.a
| Questions | Agree, % | Not Sure, % | Disagree, % | No Response, % |
|---|---|---|---|---|
| I felt comfortable during the Skype call | 81.8 | 9 | 0 | 9 |
| The information presented was clear and helpful | 100 | 0 | 0 | 0 |
| The connection of the call was good (ie, you could hear and understand staff member) | 90.9 | 0 | 0 | 18 |
| I felt comfortable asking questions during the call | 81.8 | 9 | 0 | 9 |
| Overall, I found the Skype call beneficial | 81.8 | 9 | 0 | 9 |
| I feel the Skype call was an efficient way of communicating and gathering info | 72.7 | 9 | 0 | 9 |
| I would have preferred a different means of communication with the association | 18 | 9 | 63.6 | 9 |
an = 11, only caregivers.
Discussion
As the baby boomers continue to age, the concern about Alzheimer’s disease increases dramatically. Between now and 2050, more than 28 million baby boomers in the United States will develop Alzheimer’s according to a 2015 study conducted by The Lewin Group and presented at the Alzheimer’s Association International Conference. 4 The challenge this will pose is that it will become increasingly more difficult to provide information and support services to those who desperately need it.
A recent study looked into the availability and utilization of support for caregivers caring for patients with dementia in European countries. 5 They showed that counseling, caregiver support, and caregiver education had high availability at all stages of the disease, with a decrease in the late to end-of-life stage. In the other hand, the utilization of these supports was low in the diagnosis stage with a small increase in the intermediate stage. 5 The utilization of support remains dependent on caregiver’s ability to have “access,” the opportunity to reach and obtain appropriate health-care services in situations of perceived need for care. 6 Access to support enables caregivers with different perceptions to be the part of care team at different stages. A contact person such as staff at Alzheimer’s Association can be an access point and assist the caregiver when navigating through the care and available resources. The use of ALZ i-Connect can fill the gap in reaching to caregiver at the early stage of diagnosis and the utilization of a technology that allows for both oral and visual communication, which is helpful in supporting those with cognitive disabilities.
ALZ i-Connect allows users to connect face-to-face with Alzheimer’s Association staff via Skype technology in a private setting at the doctor’s office, right after receiving their diagnosis. This initial conversation between patient/caregiver and an Alzheimer’s disease professional gives the diagnosed individual and his or her family an opportunity to ask many questions they have about memory and thinking disorders. This intervention allows the Alzheimer’s Association to share facts about the disease and resources available. Since Skype is not a Health Insurance Portability and Accountability Act-compliant information technology platform, this exchange is not meant to extract personal information about the patient or their medical history. If the patient and/or their family would like a more in-depth conversation related to their personal situation, a follow-up phone call will be scheduled at this time.
There were a few hurdles to implement this service. One of the current trends in health-care design calls for cutting costs via substantially decreasing nonclinical spaces. There may be limitations for some clinics to provide a private quiet room allocated to this service. We also attempted to provide this service for another institution, but they were not able to allow access through a firewall from outside or provide other Internet options.
It is imperative that organizations like the Alzheimer’s Association seek to collaborate and partner with the health-care community to ensure that every individual who receives a diagnosis of Alzheimer’s disease or another form of dementia receives the information and referral services they need. The ALZ i-Connect program has proven to be just such an innovative collaborative model. The program has allowed the Cleveland Area Chapter to interface with 2 key assessment center programs by providing the complementary support that is needed to educate their patients about Alzheimer’s disease and the supportive services available from the Association in an efficient and effective way. This model can be a complementary approach to the currently available phone-based helpline and provides an easy way for individuals at remote centers to connect with the association.
Conclusion
ALZ i-connect is an innovative, efficient and beneficial approach to connecting patients and caregivers to the professional staff at the Alzheimer’s Association. This model can be a complementary approach to the currently available phone-based Helpline and provides an easy way for individuals at remote centers to connect with the Association.
Footnotes
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding: The authors received no financial support for the research, authorship, and/or publication of this article.
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