A longtime client sits in my treatment room, tears dropping into her lap, crumbling a sodden tissue, unable to speak for minutes as she struggles to describe what daily life is like caring for her spouse with dementia.
Because I am a massage therapist who has worked primarily with elders, this scene is familiar and heartbreaking.
Another 10,000 Americans turn 65 every day, according to the American Association of Retired Persons, so it is also a scene likely to occur more often every day in massage therapy offices.
More than five million Americans are currently diagnosed with Alzheimer’s disease, the most common form of dementia, and that number is expected to grow, according to the CDC, to 14 million by 2060.
If that prediction is accurate, massage therapists who are just beginning their careers must prepare to meet the challenges of helping this growing client population, which includes both those diagnosed with Alzheimer’s and the family members who care for them.
Dementia vs. Memory Loss
Fear of dementia is near universal among people over 50. Any minor memory lapse is met with dread, and often goes unmentioned to others out of fear of scrutiny or judgment.
It helps to understand that Age-Related Memory Loss (ARML) is a natural aspect of aging, happens to everyone, and seems to have no predictive importance in the development of dementia. Here are some key differences between ARML and dementia:
• ARML is not progressive; dementia symptoms progress markedly and predictably.
• ARML memory loss is temporary; a word momentarily forgotten will return later in the day or perhaps the next; memory loss due to dementia is permanent.
• ARML does not affect cognition or judgment; dementia significantly and progressively affects thinking and behavior.
• ARML leaves speech and communication skills intact; dementia severely hampers speech and communication.
• ARML does not affect personality; dementia commonly alters personality markedly.
A separate condition, Mild Cognitive Impairment (MCI), does appear to raise the probability of developing dementia, and sometimes is only apparent in retrospect to family members of the person affected. In MCI, cognition alone may be affected (called non-amnestic MCI), but for some, memory, too (called amnestic MCI), though neither in enough severity to interfere with day-to-day functioning.
For anyone with symptoms of either type of MCI, early and accurate diagnosis is critical for intervention and planning. For some MCI patients, normal cognition returns. For others, symptoms are found to be caused by medication side effects or interaction, eliminating a diagnosis of MCI and allowing for adjustments that restore normal memory and cognition.
How Dementia Changes the Brain
Dementia represents organic changes in brain tissue that progressively affect brain function. Generic risk factors include an age over 65, family history (specific genetic mutations can be identified), and certain preexisting health conditions such as Down’s syndrome or Type 1 diabetes.
Selective risk factors are those which can be considered manageable or preventable, such as smoking, heavy alcohol use and health conditions that may be related to lifestyle, such as hypertension, atherosclerosis and Type 2 diabetes.
Social risk factors play a role, as well:
Evidence suggests that lack of social interaction in an elder, perhaps the result of uncorrected hearing or vision loss, may contribute to the onset of dementia symptoms.
Signs and symptoms of dementia vary according to the area of the brain affected, typically precede diagnosis by as much as a decade, and are classified as either cognitive impairments or psychological alterations:
Cognitive impairments include memory loss, with the loss of short-term memory tending to be more pronounced; confusion or disorientation; poor coordination and motor control; diminishing capacity for reasoning, making judgments, planning or performing complex tasks, or organizing information.
Psychological alterations may be distinctive to each stage of dementia. Early alterations can include mood swings; anxiety, depression, and growing frustration; loss of social awareness; episodes of wandering; and a phenomenon known as sundowning, which describes agitation or restlessness as day ends and evening begins.
Later alterations become more troubling, and can include paranoia, hallucination, anger and physical violence.
Forms of Dementia
Different types of dementia affect memory and cognition in varying ways. The most common forms of dementia include:
Alzheimer’s dementia, representing 60 to 80 percent of all dementia diagnoses. In this form, protein beta amyloid (plaques) accumulate outside neurons, and twisted strands of protein tau (tangles) develop inside neurons, eventually causing neuron death. Alzheimer’s progresses in stages, from mild impairment with subtle irritability, to complete loss of ability to sit up, respond or control movement. Life expectancy is typically 8 to 10 years following an Alzheimer’s diagnosis.
Early-onset dementia symptoms can emerge as early as a person’s late 30s to early 40s. Diagnosis is often delayed because dementia is unexpected in one so young, although early diagnosis and medication may delay the progression. With a stronger genetic link, early-onset dementia represents five percent of all Alzheimer’s diagnoses.
Vascular dementia represents 10 percent of all Alzheimer’s cases and has a later onset, often after age 80. Vascular dementia is connected to blood vessel blockage in the brain, leading to stroke; it is also called post-stroke dementia, and can co-occur with Alzheimer’s.
Dementia with Lewy bodies (DLB) is characterized by abnormal clumps of protein alpha-synuclein in neurons called Lewy bodies, named after the identifying researcher. DLB symptoms are distinct and include early visuospatial impairment (depth perception); sleep disturbances; well-formed visual hallucinations; and slowness and gait imbalance that may cause falls, but unlike other forms, no significant memory impairment. DLB can occur alongside either Alzheimer’s or vascular dementia.
Frontotemporal lobe dementia (FTLD) often has an earlier onset (age 45-60), and is marked by personality and behavioral changes and difficulty producing and understanding language, although memory is often spared until later stages.
Considerations for Clients with Dementia
Massage treatment planning for clients with any form of dementia focuses on creating an environment that promotes client safety and comfort, establishing a relationship of trust, communicating effectively, and accommodating the disease progression.
Simple adjustments to the treatment environment can help to ensure safety and comfort for an ambulatory client with dementia who receives massage at home or in a practitioner’s office:
• Reduce clutter and extraneous sounds, enabling the client to focus on a single task or interaction without distraction; working without music, for example, or extraneous conversation, can be a help.
• Conceal or remove sharp objects, lighted candles, keys—anything that may be used to inflict damage or self-harm.
• Minimize fall risk by removing area rugs or mats, ensuring adequate ambient lighting, and eliminating the need to climb stairs.
• Choose a smaller treatment room, when available, and leave the door open: A client with dementia may feel distracted, out of control and even frightened in a larger space that seems unmanageable.
• When working in the client’s home, avoid asserting control over their space; ask to turn the television or radio off and allow the client to receive treatment where he or she is most comfortable.
Trust Is Key
Establishing a relationship of trust is crucial for therapeutic touch to be successful for a client with dementia, and begins with the initial introduction: Make eye contact and smile, using the name provided as the client’s preferred one.
Create a calm presence and avoid speaking loudly or stridently. Ask permission to hold the client’s hand, gently disengaging if he or she shows signs of reluctance or discomfort, such as breath holding, teeth clenching or avoidance of eye contact.
Maintain consistency of practitioner, appointment time and treatment room, when you can; this will eliminate the need to readjust at each appointment.
Effective communication skills create an atmosphere which protects the client from feeling judged or discounted. To begin with, include the client in the intake interview, if doing so does not cause distress.
Keep your terminology simple and avoid complex questions that require organizing information before responding. For example, instead of asking the client, “Can you come for an appointment next Tuesday afternoon at 2:00 or 3:00?”, you could ask, “Can you come next Tuesday?” followed by “Will 2:00 work?”
Offer one or two choices that the client in early-stage dementia can make without stress, such as whether to start the session on the hands or feet, or whether to listen to music. Be aware that as dementia progresses, this option may cause distress and should be discontinued.
Be aware that agreement without understanding is a common early coping skill for someone with dementia. Rephrase important points using different words, and when necessary, allow the person accompanying the client to add to or amend information.
The following table summarizes effective communication strategies:
Strategies That Support the Client
Agreeing
Diverting, distracting
Reassuring
Reminiscing
Repeating
Asking; gently leading
Encouraging
Reinforcing
Strategies That Judge the Client
Arguing
Reasoning, shaming
Lecturing
Remembering
Reminding
Commanding
Condescending
Forcing
Modifying Your Sessions
Modalities and techniques that require no disrobing and minimal client participation are more likely to be acceptable and promote relaxation for a client with dementia. In addition, try these tips:
• Limit the session duration, and remain alert to the client’s willingness to continue.
• Use food-grade lubricant, such as coconut or grapeseed oil, in case the client decides to taste what’s being applied.
• Consider limiting initial touch to the hands, feet, face and scalp, adding forearms, lower legs and neck in subsequent sessions, with the client’s agreement.
• Tune in to the client’s changing needs. As dementia progresses, the client may become unwilling to accept touch or unresponsive to the practitioner’s presence. When this stage develops, it’s wise to verify these observations with daily caregivers and describe them to family members. Whether and how to continue massage treatment is a decision best arrived at with their participation and consensus.
Dementia and Practitioner Ethics
With this population, ethical issues abound: What constitutes meaningful touch? Is client participation required? What constitutes informed consent to treatment? Can someone acting on the behalf of the client provide informed consent? What role does practitioner comfort play in the decision to continue massage treatment?
There is no single right answer to these potential dilemmas, and the practitioner may undergo a grieving process whenever and however the relationship with this client ends.
Including supervisors, trusted mentors and colleagues in the process can help the practitioner find peace with the eventual decision and a pathway toward closure.
Your Touch Is Meaningful
Providing meaningful touch toward the end of life can be a blessing for the client and a gift for the practitioner, and the depth of the loss can be seen as an emblem of the ultimate richness of the experience.
About the Author:
Julie Goodwin, LMT, is an author, bodywork educator, National Certification Board for Therapeutic Massage & Bodywork-approved provider and creator of TxPlanner.org. Her 31-year massage practice focused on elders and people in treatment for cancer. She was the 2016 Alliance for Massage Therapy Education Educator of the Year. She is a regular contributor to MASSAGE Magazine, and her articles include “Massage Treatment Planning for the Type I Diabetic Client.”