The Caregiver Role in Shared Decision Making with Persons Living with Dementia

According to the National Institute on Aging, dementia is a progressive disease that causes a loss of cognitive functioning including the ability to think, remember and reason. Dementia affects more than 55 million people worldwide, most of whom are older adults above the age of 65 years old. Abnormal changes in the brain cause those with the disease to experience symptoms that worsen over time, which eventually interfere with daily life. As cognitive function worsens, individuals with dementia will require additional support from caregivers to help with daily tasks. As dementia progresses, decision-making can become more difficult, especially when it comes to making larger decisions that affect a person’s quality of life, treatment plans, and long-term needs.

Eventually, those with dementia will need to rely on their network of support to make decisions regarding their health. According to the National Learning Consortium, shared decision making refers to the process in which caregivers, family members, clinicians and individuals with dementia work together to make decisions and select tests, treatments and care plans that balance risks and expected outcomes with a person’s life wishes and values. This process allows those living with dementia to make their own decisions while providing caregivers with the information they need to make decisions on behalf of their loved one when they can no longer make decisions for themselves. Shared decision making can include everything from small, everyday decisions to larger, life-altering decisions such as treatment plans and post-hospital stay planning.

Shared Decision Making in Treatment Decisions

The Social Care Institute for Excellence explains that while healthcare professionals are responsible for explaining all treatment options, it’s their moral responsibility to allow people with dementia to make their own decisions if they have the mental capacity to decide. Caregivers should initiate discussions with their loved one at the early stages of the disease to better understand their wishes when it comes to healthcare treatment and outcomes.  As caregivers and those with dementia discuss treatment options, they should consider implementing the following tips that can help them make decisions together:

• Encourage those living with dementia to make their wishes known and express their needs early and often. This should include discussing a person’s values such as quality of life, longevity, safety and medical interventions. 
• Revisit these discussions often. As dementia progresses, a person’s wishes may change. For example, in the early stages of dementia, a person may value medical intervention, but as their disease progresses, they may come to value their quality of life versus living as long as possible.
• Document these wishes as best as possible so all support people have the same understanding of the person’s wishes.
• Look for certain behaviors that may single an inability to make decisions independently. These could include making poor judgments, wandering, anxiety and agitation, and depression.

Shared Decision Making in Financial Decisions

There are a lot of decisions people make about their finances, especially as they age. For some people, these decisions can be highly sensitive, so it’s important for caregivers to have a clear understanding of a person’s wishes for the future. Those included in shared decision making should support the person with dementia to make their own financial decisions as often as possible. However, a time will come when they will lack the capacity to make sound decisions. Before this occurs, people with dementia should assign legal powers to trusted individuals that allow them to make best interest decisions on their behalf. Here are some possibilities to consider, according to AARP:

• Power of Attorney. A power of attorney gives authority to another person to make decisions on your behalf when you are unable to make them yourself. A power of attorney has the right to access your bank accounts and sensitive information. This can be an essential tool especially in times of declining health or emergency.
• Trustee. When an individual is named a trustee of a revocable living trust, their authority only applies to property noted within that trust. Trustees have the responsibility to manage and distribute the trust’s assets as instructed within the document.
• Federal Benefits Fiduciary.  This authorization allows an agent to accept and manage federal government benefit payments, such as Social Security, on behalf of the beneficiary. The appointed fiduciary must keep detailed records and file reports stating how the funds were used.

Shared Decision Making in Long-Term Care  

It’s very likely that a person with dementia will need some type of long-term care as their disease progresses. Those with shared decision making privileges should consider the different types of scenarios that are likely to occur. These may include decisions after a hospital stay due to surgery or injury, choosing a long-term care community such as assisted living, or in-home support such as private duty care or home-health. As you discuss future planning wishes with your loved one, here are some options to consider:

• Home health care. This is a Medicare service supervised by a registered nurse, which provides active nursing care. This may also include physical, occupational and speech therapists and social workers. Home health focuses on regaining strength and relearning tasks that allow residents to live safely at home. This is often prescribed by a doctor after a hospital stay.
• Private-duty care. Trained workers provide assistance with basic daily tasks such as meal preparation, daily hygiene, getting dressed, housekeeping tasks and errand running. Nurses may supervise these personal care providers, but private-duty care is largely non-medical. This type of service is often provided to people who need additional help in the home or who want to remain living independently.
• Rehabilitation. Senior rehabilitation can take place in a variety of settings including skilled nursing facilities, assisted living communities and independent homes. Skilled nursing facilities offer short-term housing and rehab services for inpatient and acute rehab. These facilities are equipped with round the clock medical staff, social services, and provide meals and dietary counseling. Rehabilitation often occurs after injury, stroke, or other major medical issues.
• Adult day health center. This care is often provided outside the home in special centers that focus on socialization for residents while providing relief to their caregivers. Residents return home each day and will often provide transportation.
• Assisted living. Living independently will most likely become very difficult for someone living with dementia. Assisted living is a live-in option that provides services such as dining options, medication management, assistance with bathing, dressing, transportation and opportunities for socialization.
• Nursing home. This residential care option is best for those recently discharged from the hospital as well as those in need of 24-hour care. These communities provide nursing staff and assist with all basic daily needs.
• Hospice. This is one part of an end-of-life plan that lessens pain and discomfort for those who are close to death. It also provides emotional and spiritual support to the individual and their family members. Hospice care can be inpatient or received in the comfort of one’s home.

Shared Decision Making at Maplewood Senior Living

Decision-making is crucial for everyone’s wellbeing, especially for those living with dementia. At Maplewood Senior Living, we provide the tools you need to make informed decisions both for yourself and on behalf of your loved one. Our communities provide a comprehensive continuum of clinical care to meet our residents’ individual needs and wishes. Our compassionate team will get to know you or your loved one personally, so we can provide support and lifestyle programming that enhances your quality of life. To learn more about our offerings or to schedule a tour, please contact us.