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During normal times, individuals with Alzheimer's disease and related dementias are among the most vulnerable persons in society, depending on family or professional caregivers for their day-to-day survival. The current pandemic further exacerbates their vulnerability, due to both the morbidity and mortality from COVID-19 and the indirect effects of the pandemic on the social supports upon which they depend.

For those who have Alzheimer's or dementia, social connection means everything, and social distancing is a difficult concept for them to understand; persons with dementia are disproportionately affected by social distancing, isolation, and lockdown.

At least half of older adults living in long term care facilities suffer from cognitive impairment with Alzheimer's disease or other dementias. Emergency situations, such as the current COVID-19 pandemic, present special challenges to the delivery of Alzheimer's and dementia care in long term and community-based care settings, including nursing homes, assisted living, home health, home care, and adult day care.

People receiving care or utilizing services in these settings are particularly vulnerable to complications due to their age and other concurrent medical conditions, as well as being at risk for effects due to isolation.

But what can providers do to assist? What are some specific strategies they can implement to assist with loneliness and depression?

Person-Centered Care

As stated in the Alzheimer's Association Dementia Care Practice Recommendations, one of the most important steps in providing quality dementia care is to know the person. In the event of a major disease outbreak or disaster, this may be more difficult for temporary staff members or those working in a new department or other health care setting.

It is recommended that a nurse, or social worker or staff under the supervision of licensed clinicians, completes a HIPAA-compliant personal information form for each person and keeps it in an easily accessible place, such as inside a closet door in a folder attached to the back of the door.

Information on the form can include:

• Individual's preferred name (and pronouns), cultural background, religious or spiritual practices, and past hobbies and interests;
• Names of family and friends;
• What upsets the person and what calms him or her down;
• Sleep habits, eating and drinking patterns and abilities, typical patterns of behavior, and normal daily structure and routines; and
• Remaining abilities, motor skills, verbal processing, and communication abilities and methods.

Sharing information about a person living with dementia with the care team is very important in terms of providing quality, consistent, and effective care. Given the care team may change frequently during a pandemic or disaster, briefing meetings at the start of the shift will allow the staff to share pertinent information about those receiving care.

Loneliness and Social Isolation

As Americans heed the advice of public health and government officials to remain physically distanced from neighbors, friends, and relatives to fight the coronavirus, another epidemic is exacerbated—social isolation. This can result in loneliness, and the negative consequences can be severe: an increased risk of heart disease, depression, dementia, and even death.
 
The terms social isolation and loneliness are interrelated but describe different concepts. Social isolation refers to the objective absence or paucity of contacts and interactions between a person and a social network (Gardner et al. 1999), whereas loneliness refers to a subjective feeling state of being alone, separated or apart from others, and has been conceptualized as an imbalance between desired social contacts and actual social contacts (Weiss, 1973; Ernst & Cacioppo, 1999).
 
Despite these variable definitions, evidence suggests significant overlap between social isolation and loneliness (Golden et al., 2009), and the terms are often used interchangeably. Crucially, both concepts result in negative self‐assessment of health and well‐being in older people.

Even before the pandemic began, national studies indicated that nearly a quarter of older Americans (65 years of age or older) were socially isolated, meaning they have few social relationships and infrequent social contact, and about one-third of middle-aged and older adults experienced loneliness. An even larger percentage of older people confess to feeling lonely, with 43 percent of those age 60 and older suffering from subjective feelings of isolation.

Having few social connections and feeling isolated have been associated with myriad health-related conditions, including chronic diseases and psychiatric disorders. Social isolation is now viewed as a risk factor for premature death, similar to cigarette smoking, physical inactivity, or obesity.

Social distancing during the pandemic was never meant to thwart social connections, but many family members, friends, and neighbors of older adults are staying away to avoid exposing their loved ones to the virus. While that protects older adults from some health risks, the limited physical interactions reduce feelings of connectedness with others.

It can also exacerbate other health risks. Without frequent and meaningful social interactions and stimulation, older adults' cognitive functioning can decline. As the days of isolation wear on, older adults are especially susceptible to depression and anxiety and even suicidal thoughts.

How to Help

While not everyone will see the same impacts, the older adults most likely to be affected include those who already experience social isolation, live alone, or have limited financial resources, as well as those with multiple physical ailments, mental health concerns, and memory problems. So, how do we help elders to stay active and engaged?

• Plan the day. Keeping up with routines can help to add meaning to one's day.
• Stay physically active. Find exercises that can be done indoors or in one's room. Therapy or activities may be able to help find exercises that are appropriate.
• Reach out to others—via phone, email, virtually, or even by mail. 
• Promote intergenerational connection. Most elders would love to hear from their grandchildren or receive their artwork in the mail.
• Let's call it “physical distancing" instead of “social distancing." At this pivotal time, we cannot underestimate the need to stay in touch with others.

Routine is of critical importance and something that will help those in isolation. Routine is important for all of us as it tends to mitigate or reduce the stress response that we see when dealing with trauma such as COVID-19. Routines help the person with dementia know what to expect and help them to continue to do things on their own and in turn help to improve self-esteem, dignity, and confidence.

Keep in mind, it is easier to continue the routines they have come to know their entire life and that they are used to versus attempting to accommodate to facility routines or new COVID-related routines. 

When helping with routines, it is best to allow the person time to do it him or herself. This, of course, can be frustrating, especially when you know you could carry out the task more quickly, or help do the task more efficiently. As staff, we need to avoid the temptation to take over, even if the individual is struggling; the loss of confidence could make it harder for him or her to keep trying. When you do offer help, try to do the task together, rather than doing it for the person. This helps the person to feel more in control and more involved.

How a Therapist Can Help

Your therapy partner can help you establish and/or adapt routines for seniors in isolation. Some tips for making routines easier include:

• Try breaking the task down into sections. For example, the person may find it easier to continue dressing if you put the clothes out in the order they are put on.
• Even if the person cannot complete a full task, carrying out one or two steps of it—particularly the final step—can give a sense of achievement.
• Make sure that any reminders or instructions are simple. Use short sentences, with gestures and body language to add meaning. If the person no longer understands words, try using color cues or pictures.
• Be tactful. Try to imagine that you are the person receiving help, and speak in a way that you would find helpful if you were in his or her position.
• Make sure the person does not feel supervised or criticized in any way. This means checking your tone of voice as well as the words you use.
• When the dementia gets to a more advanced stage, try pointing, demonstrating, or guiding an action rather than giving a verbal explanation.

How can your rehabilitation partner help? Therapy can…

• Assist in selecting activities in which an elder can engage. Activities cannot be a one-size-fits-all. Instead, careful consideration should be given to level of cognitive decline, remaining abilities (or spared skills), interests, and effective environmental aids or cues. It is important the activity does not require a lot of set-up time and can provide immediate feedback.
• Adapt activities for persons with differing skills levels. For example, for someone who is nonverbal, use visual and physical cues to connect them to what you are saying and doing.
• Suggest remote and/or virtual activities compatible with the individual's spared skills that can be used by family members who are not able to connect physically. There are many opportunities available, including visiting museums virtually, growing a garden virtually, even “vacationing." Keep in mind, the individual may not be able to complete some tasks as well as they used to or even have the same tastes or preferences, but caregivers need to stay ready for unexpected opportunities for fun and connection because you never know what will spark their interest.
• Tailor activities to engage the five senses. For example, play music and sing together, play musical instruments, feel familiar fabrics and objects like warm laundry, potg a plant together, or even bake something in the kitchen. Sensory stimulation uses everyday objects to trigger emotions and memories in seniors who have lost their ability to connect with the world around them with the goal of evoking positive feelings and reducing behaviors.
• Identify purposeful and meaningful activities in which the individual can engage, based upon interests, roles, values, and history. For example, things like sweeping, cleaning out a drawer, organizing photos, or weeding the garden—these types of work activities create meaning for the person living with the disease. They show the individual and others around them that they are competent and valued and can help develop a strong feeling of belonging.
• After assessing for cognitive and communication abilities, the therapist can suggest interactive activities such as a simple game of compare and contrast—something as simple as pulling up a photo of a dog vs. a photo of a cat and having the resident point out what is the same or different. Another stimulating activity around this idea is to talk about something current and talk through how it has changed over time, and how it might be in the future.
  
  Based on communication abilities, the individual may be able to reflect. Start conversations that get the person talking and thinking about past accomplishments, achievements, or contributions. This can be sparked by touching an award or other physical prompts within the living environment.

• Work with families to develop a simulated-presence therapy program. Simulated Presence Therapy involves a family member making a recording in which questions are asked, such as, “I remember when you lived in Omaha, Nebraska. Do you remember that vacation we took to Disney World?" Then the recording is silent, so the resident can say something. The recording could be similar to a phone call, in which the family member can ask about pleasant experiences in the past and leave a space for the resident's answers.
• Suggest creative and art therapy pursuits indicated to sharpen capacity of the senses, promote independence, and facilitate communication. Things such as painting, music, hobbies, and other leisure skills are able to influence the well-being of individuals positively.
• Advise the community regarding opportunities related to animal-assisted therapy using live or robotic animals. Based on previous roles of the individual, therapy can suggest activities consistent with roles and abilities related to animal caretaking. Studies show that pet attachment can alleviate loneliness by acting as a coping mechanism, possibly by providing social support and companionship.

Dr. Kathleen Weissberg, MS, OTD, OTR/L, CMDCP, CDP is national director of education for Select Rehabilitation. She can be reached at 724-640-0783 or kweissberg@selectrehab.com.