Dementia is a family disease, engaging spouses, partners, children and grandchildren in wrenching decisions about medical and custodial care, grim financial realities, and a lifetime of intergenerational dynamics and allegiances. Such decisions can strain even the happiest families.
Choosing when residential care is indicated for a loved one’s safety and security is challenging enough that enlisting a team of medical and residential care professionals is often recommended. Delaying these decisions until late-stage dementia symptoms emerge can significantly limit options for care.
In addition, complex financial considerations come into play; without careful planning early on, the assets of a healthy spouse or partner, accumulated over decades, may become endangered.
What Kind of Help Can I Get?
People diagnosed with dementia have different kinds of residential care available:
* Memory Care is long-term care designed specifically for dementia patients, often located within an assisted living facility. Typically, a memory care unit is physically separated from the other wings, kept locked to prevent residents from wandering, and has a higher patient-staff ratio.
Costs of Memory Care: Medicare may pay part of the cost if the patient requires skilled nursing care. Medicaid may cover the cost of care, provided the facility is enabled to accept Medicaid and a Medicaid-designated slot is available when needed. Many people enter a memory care unit using long-term care insurance and then transition to Medicaid when coverage expires.
* Custodial Care includes non-medical assistance with activities the person is unable to perform unassisted, such as using the toilet, bathing, dressing or taking medications. Custodial care can be provided at home or in an assisted living facility.
Costs of Custodial Care: Because custodial care assists the dementia patient who does not require skilled nursing care, Medicare does not pay any part of the cost, although Medicaid may.
Residential Dementia Care Settings
Settings for residential dementia care include private care homes, typically established in a large private residence located within a residential neighborhood. State-licensed, regulated and inspected, private care homes generally have fewer residents and a more homey atmosphere. On-site medical personnel, however, are rare, and consistency of care and effectiveness of oversight tends to be less than families of dementia patients may hope for.
Corporate facilities are also state-licensed, regulated and inspected. Medical personnel and treatment equipment are often more widely available, as are visits by speech and occupational therapists and volunteers to increase residents’ social interaction. Corporate facilities are, by nature, less homey, and house a larger number of residents.
Massage Therapy and Dementia Care
Practitioners who want to provide massage in a dementia care facility have a range of options, which can vary widely from state to state and sometimes from city to city. In some areas, massage therapists are employed as staff; other areas may have facilities offering contractual opportunities.
Sometimes massage therapists have no relationship with the facility and provide service on a private basis, hired by the client’s family.
As you consider working in a dementia care facility:
- Do Your Homework
Research state regulations and types of facilities in your area. Read their online reviews—the state regulating agency may post records of complaints and resolutions on their website. Visit each facility’s website, noting names of administrators and any mention of massage therapy services. Finally, reach out to local practitioners and ask about their experiences with various facilities.
- Draft a Plan
Based on your research, decide whether you will seek employment or a contract for services; and whether you will work through the facility administration or advertise directly to residents’ families.
- Establish Credibility
Offer a résumé highlighting specific training, especially any experience in dementia care. List memberships in professional organizations and any dementia-related volunteer experience; solicit letters of recommendation from trainers or supervisors.
- Provide Evidence of Benefits
Offer the details of research studies supporting massage for dementia; outline the physiological effects of relaxation response. Tie the effects of massage to relief of specific dementia symptoms such as insomnia, anxiety and medication side effects, and highlight the importance of nurturing touch for people with dementia.
Caring for the Client with Dementia
Certain qualities are highly valuable when working with clients who have dementia:
Gentleness: Use a slow pace; be a supportive presence.
Mindfulness: Maintain your focus on the client’s wishes, within boundaries; consider withdrawing a portion of your focus, to avoid exhausting both the client and yourself.
Tenderness: Provide loving, nurturing touch for as long as it is therapeutic for the client and for yourself.
Acceptance: Respect touch boundaries; tolerate client eccentricities, provided they fall within your personal boundaries.
Maintain Your Own Boundaries
As dementia progresses, changes in client conduct may require massage practitioners to define personal parameters for tolerance of certain behaviors, and challenge your ethics and scope of practice.
Whenever possible, include an observer in the treatment room who witnesses all client-practitioner interactions. It is not unusual for someone with dementia to misconstrue or imagine conversations and interactions that did not actually occur. They have no malicious intent; this behavior is simply part of the disease progression for some people.
A witness to actual conversations and events protects both the client and the practitioner. Even with a witness in the room, unacceptable client conduct may occur. Here’s how to handle it:
At the First Breach of Your Boundaries:
- Gently describe the client’s specific behavior in simple terms.
- State that the behavior is unacceptable.
- Continue treatment if acceptable to both the client and you, the practitioner.
For Subsequent Breaches:
- Gently remind the client with dementia that a specific behavior is unacceptable.
- Continue treatment only if acceptable to both you and the client.
- Seek counsel from a supervisor, mentor or trusted colleague.
- Meet with family or caregivers to clarify the conditions for continuing treatment.
Support the Dementia Client’s Family
Dementia places extreme stress on family dynamics that may already have been challenging—it may intensify past resentments, create guilt about the inability to change the disease’s progression, and foster anxiety about future financial burdens.
A massage therapist may witness negative emotions and outbursts among the dementia client’s family, who may feel invaded, shamed, even replaced. When this happens, it’s wise to:
* Maintain neutrality; listen and support, but withhold judgment.
* Offer to share general information about the loved one, but defer questions about medical care.
* Offer to teach simple hand, foot and scalp massage to a willing family member, for times the client with dementia seems disinterested in touch from the massage practitioner.
* Give referrals. If asked to treat other family members, it may be best to refer them to trusted colleagues, in order to preserve confidentiality and stay within your scope of practice.
Take Care of Yourself
Self-care for massage practitioners is crucial when working with clients who have dementia. Confide in a trusted mentor or colleague, and get massage as often as possible.
Perhaps most important of all: Empower yourself by talking with your own family about their wishes for their later years, and creating a plan for your own.
About the Author:
Julie Goodwin, L.M.T., is an author, bodywork educator, National Certification Board for Therapeutic Massage & Bodywork-approved provider and creator of TxPlanner.org. Her 32-year massage practice focused on elders and people in treatment for cancer. She has presented at American Massage Therapy National Conventions and the AMTA Schools Summit, and is the 2016 Alliance for Massage Therapy Education Educator of the Year.