Dealing with the Distance of Caregiving for Dementia
Helpful ideas to help with long-distance caregiving responsibilities
“Out of sight, out of mind” goes the saying, but for a long-distance caregiver this could not be further from the truth. In fact, having a loved one requiring care “out of sight” through geographical separation can actually lead to stress levels equal to or greater than that of local caregivers.
Even if you are not a long-distance caregiver yourself, you may know someone with family members (perhaps affected by dementia) who require care and live far away. While the definition of “far” may vary from out of town to overseas, anything over an hour’s commute is considered “long-distance”.
Caregiving for anyone is an additional responsibility that is physically and emotionally very demanding. On top of daily tasks, overseeing the life of a loved one requires a lot of effort. Having to take on these tasks from a distance results in unique (and often disproportionate) challenges, which heavily affect the life of the caregiver and can lead to negative health consequences. Therefore, learning to deal with the distance is a crucial step for the sustainable wellbeing of the caregiver(s) and their loved ones.
How to deal with dementia from afar
Long-distance caregiving is not a recent phenomenon, but globalization and the pandemic have increased the number of people living out of care receivers’ households. This form of caregiving differs vastly from on-site family caregiving and requires additional help to support the physical, social, and contextual dimensions of the caregiving process. To help with these tasks, we have outlined 5 major ways you can improve your distant caregiving assistance:
1- Supporting the primary caregivers or seeking professional help
Caregivers often unrealistically assess their ability to provide the care their loved ones truly need. Especially as the disease progresses, their loved one’s needs intensify and caregiving strategies that once worked may require reassessment. Family members may lack the training, skills, and emotional stamina to provide care, especially as they are tugged into competing priorities among different generations.
To address this, professional care managers, nurses, personal support workers, day programs, and community supports are essential to managing hands-on caregiving duties. Professional help may even involve nutritionists, private naturopathic care, mental health services, and even respite care for both the primary caregiver.
Understanding the type of disease your loved one has, and being educated about its progress is necessary to properly assess the functional status of the individual requiring care. Motivating the primary caregiver to observe activities of daily living (ADLs) can help detect new symptoms that can be used to track the advancement of the illness. From a distance, you may notice changes in behavior more acutely since you are in less frequent contact with the care receiver. Moving beyond basic terminology and disease facts, education also involves learning how to navigate legal, financial, and medical information related to the management of the care of your loved one.
3. Involving your Employer
Getting your employer’s support is underrated and very important. Some workplaces are striving to create more inclusive environments supporting hybrid teams while others are opening up to the concept of remote work- which helps accommodate employees who wish to visit family members abroad (ill or not). Flexibility and inclusivity in the workplace are also beneficial in the form of wellness and mental care benefits, where a remote caregiver can take advantage of perks like therapeutic and professional services. Perhaps your job does not allow for remote contributions. In this case, having your co-workers or employers understand your situation will prove useful should any emergencies occur, or the need for personal days arise.
4. Diverse Support Networks
Long-distance caregiving calls for strong support networks. The caregiver must have a local group of people that understand their situation and can provide emotional and social support. In a digital day and age, support networks may even take the form of social media users or articles to help with education and motivation.
However, it is also a good idea for them to share a network of people close to the care receiver to support their primary caregiver(s) or to ensure an excellent standard of care from professionals. Having these reliable contacts also provides peace of mind, knowing they would do what they can to help should an emergency occur.
Technology has been helping long-distance caregivers keep their loved ones organized, safe and connected. From automating prescription deliveries to handling falls, technology is an indispensable tool to manage the distance barrier.
Organizational tools can ease the mental clutter of primary caregivers, while communication tools adapted to the elder’s physical ability can help engage them in social and cognitive stimulation.
Software tools including social media and apps like Memoryz are designed specifically for individuals seeking a community of people in similar circumstances to share stories and support. In today’s world, technology holds the power to bridge the gaps imposed by distance and can assist the primary caregiver with health monitoring while improving the quality of life of their loved one.
Knowing that the number of long-distance caregivers is growing, it is important to understand how distant caregiving involves additional responsibilities beyond those of onsite care. Using these fundamentals as a baseline, a caregiving strategy can be created as a toolkit to provide valuable help to the entire family. Studies have even found that despite the distance separating some caregivers from their loved ones, remote caregivers can indeed provide the same support as local or in-house caregivers.
Benefield, Lazelle E, and Cornelia Beck. “Reducing the distance in distance-caregiving by technology innovation.” Clinical interventions in aging vol. 2,2 (2007): 267–72.
Collins WL, Holt TA, Moore SE, Bledsoe LK. Long-distance caregiving: a case study of an African-American family. Am J Alzheimers Dis Other Demen. 2003 Sep-Oct;18(5):309–16. doi: 10.1177/153331750301800503. PMID: 14569648.
Vezina M & Turcotte M. Caring for a parent who lives far away: The consequences. Statistics Canada, Ottawa: Canada, 2010. [cited in November 2018]. Available at: https://www150.statcan.gc.ca/n1/pub/11-008-x/2010001/article/11072-eng.htm