Key Points
• The positive power of touch can release endorphins, encourage deeper breaths, and restore an overall feeling of well-being.
• While manual therapies do not stop the progression of Alzheimer’s disease or dementia, they can help improve the patient’s quality of life.
Dementia
An umbrella term describing cognitive degeneration that mostly affects older adults.
Alzheimer’s Disease
A progressive degenerative disorder of the brain causing memory loss, personality changes, and eventually death. Alzheimer’s is the most common type of dementia.
Source: A Massage Therapist’s Guide to Pathology by Ruth Werner
Intention and presence can be as important to a massage or bodywork session as the work given and received. This is no truer than when clients who have Alzheimer’s disease or dementia are the recipients of your hands-on work. With these clients who may not know who you are or why you are there, intention and presence become everything. Let’s look at this special population of clientele.
A Costly Disease
According to the Alzheimer’s Association, 55 million people worldwide live with Alzheimer’s disease and dementia. By 2050, the number of adults living with Alzheimer’s in the US will more than double, costing the nation nearly $1 trillion. The human cost to care for people living with Alzheimer’s and dementia is just as weighty. In the US alone, 11 million people—mostly family and friends—are unpaid caregivers for people in this group.1
While there are more than 100 types of dementia, Alzheimer’s is the most notable and prevalent. The dominant sign of Alzheimer’s is memory loss that disrupts daily life. Other signs include difficulty with reasoning or problem-solving, confusion with time or place, decreased judgment, and changes in mood or personality.
Finding ways to bring comfort to these patients is high on the caregiver’s list. And while manual therapies cannot stop the progression of Alzheimer’s or dementia, they can help improve the patient’s quality of life. According to Ruth Werner, author of A Massage Therapist’s Guide to Pathology, research has shown that massage for patients with Alzheimer’s can help with some of the disease’s primary symptoms: orientation confusion, restlessness, and combativeness.2 Anecdotally, those who work with these clients know massage and bodywork can do so much more.
Patience and Adaptability
Dawn Castiglione, owner of Day-Break Geriatric Massage Institute, says that while working with clients who have Alzheimer’s or dementia can be challenging, “It is also one of the most rewarding experiences you’ll ever encounter as a massage therapist.” But this work is the epitome of “it’s not about you.”
The client who has Alzheimer’s or dementia may never “know” you. You may be a stranger to them each time you arrive for an on-site session, so the context of what you do and the intention with which you deliver your work are critical. Sometimes, the most important part of your session is simply holding the client’s hand.
It’s important to remember that each client you see in this population is unique and has their own story. Carefully navigating intake protocols, remaining present throughout your session time, and knowing you may have to pivot in a moment’s notice are all part of the work.
“Every person with dementia and Alzheimer’s presents differently,” says Dr. Joi Edwards, PT, MT, who started working with this population in 2014. “Some may be in the end stages, or late stages, or anywhere in the middle. At my clinic, we don’t get a lot of combative patients, but I have worked with them before and that can be challenging. Some patients may be very forgetful—in a 30-minute conversation, they may repeat the same statements or questions 3–5 times.” So, patience and good verbal and nonverbal communications skills are key.
Beyond that, practitioners who work with elderly clients need a “quality of presence that is informed by a respectful attitude and caring intention,” says Mary Kathleen Rose, author of Comfort Touch: Massage for the Elderly and Ill and founder of Comfort Touch, a nurturing form of acupressure to address the special needs of people in medical settings. Rose says MTs also need training in the physical and psychosocial issues associated with illness and aging. Ultimately, she says, the intention is to “bring comfort to the client, respecting their physical and emotional needs with safe, effective, and appropriate techniques.”
Tips for Therapeutic Success
Working with clients who have dementia requires a slightly different protocol. From the health intake to frequent check-ins throughout your session, you need to be more attentive to, and more attuned to, this client. Castiglione says it requires advanced skill to “engage and benefit these clients without threatening the delicate balance of thoughts and emotions by which they often seem trapped.” Here are some expert tips for making your work with clients who have Alzheimer’s or dementia the most successful it can be.
Focus on Communication
“Our usual method of communication—speaking—will likely be a bit challenging, especially as the client’s condition progresses,” Castiglione says. “And being aware of what not to say, as well as what is appropriate to say, is very important.” She says beginning a sentence with, “Do you remember . . .” is not a good idea. “This often elicits a great deal of frustration if they are struggling to focus on particular memories, or struggling with how to get words out on the subject if they do remember, or experiencing irritation over not being able to even connect with the details of your question at all,” Castiglione says.
While verbal processing may be difficult, Rose suggests it’s important to say hello using the client’s name. “Tell them who you are and your intention for being there. When I say this, I am sitting at their level. I might take a hand or touch a shoulder when I say this. I will notice their nonverbal response, especially if there is no verbal response. Sometimes, they will smile, or extend their hand for more touch, or point somewhere wanting touch.” Be prepared to communicate verbally and nonverbally.
Understand That They May Not Know You
It’s very possible that the client with dementia may not recognize you from session to session, may not be able to speak, or may not be able to understand your words when you speak, Castiglione says. You may find, however, that after multiple visits, your client may begin to connect with your energy as you approach them, recognizing that something very positive usually happens when this person arrives, she says.
Monitor Stimulation
Castiglione says the dementia client will often tolerate only a very short amount of either physical or emotional stimulation, so therapists should plan shortened massage sessions and be flexible with regard to which methods of touch are agreeable to the client on any given day. “Be aware of their facial expressions and any tensing of muscles as you touch them. Be open to the idea that you may spend an entire session just holding their hand—it may be just what they need in that moment. Sitting silently together can be an extremely rewarding session for client and massage therapist alike.”
Establish Safe Touch
The client with dementia often senses touch, but their relationship with their surroundings are often in a state of “disconnect.” Therefore, the safest first point of contact, Castiglione says, may be offering your outstretched hand to them with the expectation that they may reach their hand back to you, or at least not feel uneasy if you then begin by touching, holding, or stroking their hand.
Rose says gentle manual therapies like Comfort Touch are primarily calming to the nervous system. “Generally, people with Alzheimer’s or dementia experience fear, anxiety, and isolation because of their condition. They might understand more than they are capable of talking about. They might not understand your words, but they do understand touch that is offered in a caring way. They can understand caring intention. Touch is a way to communicate that is nonverbal, and that validates their very humanness.” She says a slow pace and steady, consistent pressure of Comfort Touch makes it feel safe and predictable for the person. “This is so important for people who are experiencing the loss of control of their ability to think and communicate clearly.”
The positive power of touch can release endorphins, encourage deeper breaths, and restore an overall feeling of well-being. Residents in memory-care facilities are often touch-deprived, Castiglione says, which can cause them to be further out of touch with reality. They receive touch when they are bathed, dressed, fed, or given medications, but that’s not enough. “A loving touch with the sole intention of bringing calmness or joy to a client with dementia will enable them to thrive and can make all the difference in their world. Their daily caregivers may even experience far less agitation in their client as they assist them with activities of daily living.”
Meet Eye to Eye
It’s a good idea to seat yourself at the client’s level, rather than towering over them when you first make physical contact, experts advise. Similarly, it’s wise to approach clients from an angle where you are clearly seen by them, before you reach them. “Approaching from behind or touching their back or shoulders if they can’t see you is often startling for them, which can cause them to withdraw completely or express agitation physically by swatting their hands to keep you away,” Castiglione says. “Speaking gently, clearly, with a smile, and looking straight into their eyes is generally a more calming approach and will likely yield a more relaxed and productive visit.”
Handle Agitation Carefully and Respectfully
One challenge many practitioners might face when working with clients who have dementia or Alzheimer’s is agitation. “A lot of times agitation has an origin,” Edwards says. “Sometimes it’s as simple as them not being heard.” She says the manner in which you approach someone with dementia, including tone, word choice, or even body language, can add to or reduce agitative behaviors in a client with dementia. With new clients, it’s also wise to ask families or caregivers ahead of time about any combativeness or agitation issues so you’re prepared.
A Greater Purpose
Working with elderly clients has been profound for so many who have invested themselves with this community. For Rose, it’s the lives well lived that speak to her. “I have loved working with elderly clients for so many years. I love the life stories I’ve heard from them, and the stories their bodies have told me when I touch them—stories of work, activity, family, life experience, physical challenges and changes, joys of being in a human body. It is humbling to work with this population, and that is one reason I have enjoyed it so much. The gratitude that has come my way is profound. And I am most grateful.”
After sharing an emotional connection during sessions with clients who have Alzheimer’s or dementia, Castiglione says the blessings flow both ways—enveloping the therapist as well as the client. “Both can experience an elevated mood, a sense of purpose, and a general sense of comfort and contentment. You will never forget the feeling you have when, as a massage therapist, you have connected with a client who has dementia and you are equally in that moment together.”
For Edwards, this work has not only helped prepare her to navigate her own journey with her father who has dementia, but she says it has heightened her patience, grace, and empathy. “This population is so appreciative of life and the little things,” she says. “Their gratitude and honesty really resonate with me.” In addition to the fulfillment that comes from the work, Edwards says she’s learned life lessons working with her elderly patients. “It has allowed me to see the good, bad, ugly, and all the in-between stages that a person may go through. It has allowed me to see how members of the family can have different perspectives about the same loved one. It has allowed me to practice my patience and compassion, my listening and understanding, and my being OK with not understanding everything. It allows me to see the circle of life in a different light. And it has allowed me the perspective to enjoy the little things. It has increased my faith tremendously.”
Edwards says there is power in the connection made with these patients. “Even though a person may not be able to talk to me or understand what I am saying to them, I can hold their hand, and watch their eyes light up, and that’s what it’s about for me. The power of touch. The power of kindness. There is something so spiritual and powerful about that. I take pride in knowing that sometimes I may be one bright spot in an otherwise dark day for the families and patients. I am super proud and thankful that I was called to do that.”
Notes
1. Alzheimer’s Association, “Facts and Figures.” Accessed November 2022. www.alz.org/alzheimers-dementia/facts-figures.
2. Ruth Werner, A Massage Therapist’s Guide to Pathology, 7th ed. (Books of Discovery, 2019): 175.
3. LeadingAge LTSS Center, “COVID-19: Stress, Challenges, and Job Resignation in Aging Services.” Accessed November 2022. www.ltsscenter.org/workforce-study-pinpoints-impact-of-pandemic-stresses-on-turnover.
• Older African Americans are 2x as likely to have Alzheimer’s and other dementias as older white Americans.
• 2/3 of Americans with Alzheimer’s are women.
• 30% of caregivers for this population are 65 years or older; two-thirds of caregivers are women.
Source: Alzheimer’s Association, alz.org
It’s Easier for Me
“Working with the Alzheimer’s and dementia population, sometimes family members will thank me and comment on the amount of patience I have,” says Dr. Joi Edwards, who sees elderly patients at a continued care facility. “I usually tell them though, it’s not that I have superhuman patience—it’s harder for family members to appreciate the quirks, challenges, and changes in their loved ones because they compare who they are now to who they used to be. And they miss that. The family has known their loved one in various stages of dementia, and in a sense has had to mourn (more than once) the person they used to be, throughout what can be a very vicious and progressive cycle. I, however, met and fell in love with who they are, their innocence, feistiness, raw emotion, and behavior, in this stage.”
Being the Eyes and Ears for Your Clients
The community of health-care workers who staff nursing homes, dementia centers, and assisted living facilities are allies in the difficult journey that is caregiving. But this community has changed significantly over the past decade and especially since early 2020, when it lost nearly 13 percent of its workforce since the onset of COVID-19. More than 95 percent of the nation’s nursing home and assisted living facilities across the US today are dealing with staff shortages; nearly one-third of those are dealing with significant staffing challenges.3 That means each of these direct-care professionals now has less time than ever to interact with their elderly residents. As the ratio of caregiver to resident/patient becomes more skewed, basic caregiving and medication dispersal become the most these staff members can attend to in a day.
Dawn Castiglione, owner of Day-Break Geriatric Massage Institute, says with health-care workers exiting the field of elder care in droves and remaining staff being stretched thin with the number of residents in their care, “It becomes increasingly urgent for massage therapists working with seniors to become truly invested in every aspect of their clients’ well-being.”
While MTs can’t diagnose or prescribe, Castiglione says MTs are in a unique position to recognize the subtlety of changes in senior clients that can be, and often are, of severe consequence. “Even small changes in our clients’ behavior can signify an emotional shift or a decline in physical health taking place within them.” She says it’s more important than ever for massage therapists to remain diligent in their documentation notes. “Having record of these occurrences enables the therapist to then make informed decisions about whether changes in their client need to be reported to the client’s health-care team of nurses, doctors, caregivers, or family members.”
When the manual therapist serves as a “partner” in a client’s overall state of health, Castiglione says they become part of the “care team” that has an investment in their client’s overall well-being. And that partnership remains, whether your elderly client is frail and bedridden or active and in good health.
Karrie Osborn is senior editor at Massage & Bodywork magazine.