Navigating FTD Long-Term Care During the COVID-19 Pandemic
The decision to move a loved one into a long-term care (LTC) facility can be a difficult one. Safety and stability — for the individual with FTD and for family members — often factors into consideration. The COVID-19 pandemic has complicated these considerations, as LTC facilities have emerged as frequent locations for COVID-19 related infections and deaths.
COVID-19 has impacted facilities severely for a number of reasons:
- Due to their proximity to each other, LTC-facility residents are at higher risk of contracting COVID-19.
- Because of the generally advanced age of LTC-facility residents, and the greater likelihood of them having comorbid conditions, they are at higher risk of succumbing to COVID-19.
- Many facilities are chronically understaffed; because of the pandemic, that shortage has been felt even more.
- LTC staff often work at multiple facilities, which can also increase the spread of infection.
The Impact of Restrictions
The restrictions imposed in order to prevent the spread of COVID-19 can add anxiety, as families, friends and caregivers have largely been prohibited from visiting facilities during the pandemic. If a resident contracts COVID-19, they won’t have access to the comfort of their loved ones, causing added stress all around.
Activities within facilities, including social gatherings among residents and other physical activities, have also been restricted. While a necessary safety measure, such restrictions can have a host of additional negative consequences. Changes in routine are difficult for LTC residents, particularly those living with dementia. For people with FTD, lack of socialization may worsen cognitive symptoms and contribute to neuropsychiatric symptoms such as agitation or depression. A lack of exercise and cognitive stimulation can lead to sleep disturbance, anxiety and depression.
Changes in sleep are especially worrisome as they can result in delirium and agitation. Social isolation is difficult for all to bear, but can be especially difficult for people with FTD, as they may not fully understand what is happening and may feel abandoned, leading to sadness, loneliness, anger and even suicidal thoughts.
Making the Best of Challenging Times
During this unprecedented time, it is particularly important to consider what can be done when a loved one with FTD is in long-term care:
1. Share your perspective, and inform yourself of facility rules. It is important to speak to the manager(s) to make sure they understand the importance of your role as caregiver for someone with FTD. Ask for specifics about visitation policy. In some cases, caregivers have been granted privileges to visit to provide essential help with care or feeding. If visitation is possible, find out what you can and cannot do, along with what protective equipment will be supplied to you, or what you may have to bring.
2. Educate staff about FTD. Make sure staff are aware of the challenges that may arise caring for someone with FTD during the COVID-19 pandemic:
- Persons with behavioral variant FTD may exhibit disinhibited behaviors and try to get physically close to other people, in defiance of social distancing.
- Apathy and loss of judgment can prevent strict adherence to safety rules, such as wearing masks and washing hands.
- Persons with progressive supranuclear palsy and corticobasal syndrome have motor impairments as well as cognitive changes, which means they often need help with basic activities of daily living such as grooming, toileting, and even feeding — for them, social distancing is impossible. Imparting information about these challenges is especially important if you have been providing a lot of the care yourself for basic activities of daily living such as grooming, feeding, etc.
- Those with semantic variant PPA have difficulty understanding, so it can be challenging to communicate to them the risks of physical touching, the need to wash their hands or to wear masks, and the reason their families can’t visit.
3. Foster communication. If possible, provide a means for your loved one to communicate with you, such as a phone or iPad that they could keep in their room or locked somewhere (to be used only by them and with or without staff assistance, depending on their ability).
4. Ensure that the staff has access to the tools you use to communicate. If your loved one does use assistive devices, staff should be made aware. (Note that there may be new staff around).
5. Sustain what level of routine you can. Routine can be comforting to people with cognitive impairments as well as helpful for the staff, so if you call or do virtual visits try to do them regularly at a set time.
6. Check whether window visits are possible. If they are allowed, make sure they don’t cause your loved one agitation. If they don’t understand why you’re not coming into the home, it may be better not to go.
7. Consider changes carefully. If your work situation or other factors have led you to consider bringing your loved one home during the pandemic, then it is absolutely imperative that you inform yourself of the facility’s policies regarding a return. In some cases your loved one’s spot might be reserved for a limited amount of time. In other cases their bed would be given away almost immediately.
Consider whether you have the resources and know-how to attend to your loved one’s symptoms in your home. Finally, consider that if something changes — for example, you need to return to work — it will likely be unsafe for the person diagnosed to stay home alone.
8. Monitor your own physical and mental health. This is a stressful time for all. You are not immune to the virus and so you must take care of yourself. The separation from a loved one and the anxiety about their health can take its toll. It is important that you get the supports you need. Reach out: contact AFTD’s HelpLine by email ([email protected]) or by phone at 866-507-7222. Many AFTD support groups have been meeting via virtual options. Take care of your health by connecting with people while maintaining safe physical distance. Exercise as much as you can and get a good night’s sleep. Be mindful of and tend to the grief that the current situation – and your FTD journey as a whole – may be giving rise to in different and more challenging ways today.
These times are requiring us to learn new ways of connecting and maintaining well-being, for ourselves and for our loved ones. While this is a challenging time, you already know how to rise to the challenge of the FTD journey. You are resilient, and you are better prepared than many to face whatever the time ahead may bring. You’ve got this.
Carmela Tartaglia, M.D., FRCPC