What challenges face the caregiver of a person with dementia?
Lori McKenna: The unknown regarding the progression of the disease. The grief that they may experience following diagnosis: anger, fear, depression, isolation, and a sense of loss. There are also changes in the relationship. There are communication challenges, behavioral challenges, and increased dependency.
Caretakers must plan for the future. This often means legal planning, such as preparing one’s documents for end-of-life care. There are also financial implications of care, such as a caregiver potentially stepping out of the workforce prematurely. There are also increased responsibilities. Caregivers experience fatigue. They have questions about sharing a diagnosis. There is stigma. Asking others for help can be hard. Staying healthy can be hard. Maintaining one’s own sense of self beyond caregiving responsibilities can be difficult.
How might a caregiver talk to a person with dementia?
Lori McKenna: This depends on the progression of the disease. It’s important to recognize that the disease affects each person differently. Patience is helpful. Speaking slowly and clearly in an environment without a lot of stimulation or distractions is useful. Asking one thing at a time. Avoid saying “do you remember?” Avoid correcting. Writing things down can be helpful. Considering the feelings behind the words is important. Don’t personalize the care recipient’s changes or behaviors. Getting support for one’s self is critical as is a sense of humor, friendships, rest, and help to name a few.
What kind of support is available to caregivers?
Lori McKenna: There are supports in the community offered as either workshops, ongoing monthly groups, and groups offered by Area Agencies on Aging, the Alzheimer’s Association, and here at the Memory Program at the UVM Medical Center.
We have two new groups for caregivers that we are particularly excited about. One is called TEACH, which stands for Training, Education and Assistance for Caregiving at Home. It is targeted for those who are new to caregiving. It is a therapeutic group that meets for 90-minute sessions for four consecutive weeks. We focus on education and skills training for self-care, communication, resources and systems navigation, and future planning.
We also have a group called CARERS, which stands for coaching, advocacy, respite, education, relationship and simulation. This more intensive group is focused on developing skill and caregiver self-efficacy and is designed to increase the understanding of the psychological symptoms of dementia and to address caregiver burden. This group is meant for those who have been actively providing care for a long time and likely care for someone with advanced disease.
Trained simulated patients attend all group sessions. Both the TEACH and CARERS program are evidence-based. We are the only clinic in the US providing these groups to date. We hope to change that in the future by becoming master trainers ourselves so that we may train other facilitators in Vermont to run these beneficial groups throughout the state.
Additionally we offer groups that specifically address dementia education and a group called “Powerful Tools for Caregivers,” which is a scripted, evidenced-based program designed to improve caregiver skill.
Lastly, in addition to these groups, we provide an array of services at the Memory Program, such as individual and family work, care partner support, identification of community resources, grief/loss and adjustment issues, future planning, behavioral strategies, and respite planning.
How can a caregiver build a support network?
Lori McKenna: This varies depending on the needs of the individual and level of comfort with diagnostic disclosure.
Some people feel a bit protective of letting others know about memory loss and, subsequently, may be isolated or unavailable to obtain available community resources. However, certainly obtaining an initial social work assessment can be a first step in developing a system of support. Learning about resources in the community is helpful. If a caregiver comes to a group, they often will connect with another participant and develop a network in that way. Networks also include the health care team, faith-based communities, neighbors, family members, online opportunities for dementia education, support and coaching to name a few.
Certainly connecting with the Alzheimer’s Association can open a world of opportunity for support for caregivers. The Center on Aging at the University of Vermont is also a great resource for support, as are Area Agencies on Aging, Memory Cafes, SASH (support and services at home) workers, and so on.
Who can a caregiver turn to when they need care themselves?
Lori McKenna: First and foremost, they can turn to their primary care physician or anyone on their health care team. Many reach out to family, friends, faith-based communities, and community support groups. They certainly are welcome to reach out to the family support services at the Memory Program, or at any of the agencies in the community providing dementia care.
What is caregiver burnout or stress?
Lori McKenna: Caregiver stress occurs when a person is so overwhelmed by their responsibilities for someone else that they are not taking care of their own physical, mental and emotional needs.
Prevention is the best approach. Take much-needed respite or breaks from caregiving responsibilities, remain connected to friends, family and community, and get regular exercise, nutrition, sleep, and find joy.
Stress may also occur if one is managing both the needs of the care recipient and work demands. Financial stress associated with caregiving is a very real challenge for many people. It can be very helpful if one becomes educated about the disease of their care recipient and its progression.
It’s important to seek out community resources, attend to legal planning, and develop a plan B of care should your present plan of care take an unexpected turn. Make sure you have regular check-ups, and let your doctor know if there are changes in your mood, appetite, stress level, or sleep.
There are some warning signs of caregiver stress: denying the disease, personalizing the behavior of the care recipient, withdrawing from friends, increased anxiety and depression as well as increased anger, crying, confusion, and ability to focus. Exhaustion is a red flag. As is irritability and lack of concentration. Health problems may begin to appear.
How may caregivers empower themselves to take care of their loved one?
Lori McKenna: Prevention. Education. Support. Respite. Future plans.
What should caregivers do to prepare for doctor’s visits?
Lori McKenna: Caregivers should come to the doctors’ visits with updated information about new medical events, falls; accurate list of medications, changes in mood, memory, or function, and new challenging behaviors.
It can also be helpful if the caregiver lets the doctor know how they are functioning and coping in the caregiver role so that necessary referrals for supports can occur.
What kind of financial or legal planning must a caregiver do?
Lori McKenna: It is important to update financial and healthcare arrangements. Advanced care planning should occur as soon as possible. Some people prefer to work with lawyers to ensure that their wishes and the wishes of the care recipient are carried out.
It is useful to develop a trust or will, advanced directives for health care, advanced directives for financial and estate management, assigning a durable power of attorney and a health care proxy. Some may want to prepare medical documents with their primary care physician, such as a do not resuscitate order.
How does a caregiver assist with medications?
Lori McKenna: Caregivers may provide verbal prompts or written notes to assist with medication management. As the disease progresses, there may be a need for more advanced assistance, such as having medications bubble packed by a pharmacy.
There are also medication management systems which can be pre-loaded and will dispense medications at set intervals throughout the day. It may become necessary, when medication reliance is unpredictable, for a caregiver to assume primary responsibility for dispensing medication or hiring a nurse to do so. There is not one answer that fits all, like many of the challenges inherent with caregiving, often plans evolve over time as needs change.
What resources are available to caregivers?
Lori McKenna: There are many resources available for caregivers. There are also roadblocks, which often obstruct obtaining them. One can be the cost associated with care. Many people do not have long-term care policies. Many people do not have a support system, or others may live in rural settings where care is not readily available. However, resources include those previously mentioned in the community, as well as in-home care provided by home health agencies, adult day programs, geriatric care managers, and residential care as well as respite services.
What do patients with dementia need more from their caregivers?
Lori McKenna: Those with dementia need their care partner to learn about the disease so that they understand what they are seeing and experiencing. They need them to be patient with the changes. They need to be involved in as much of the future planning as possible and as early in the disease process as possible. They need respect, and encouragement to maintain independence for as long as possible.
They need to feel they have a sense of purpose, with dignity and respect. They need their care partner to take care of themselves. They need to be involved in the community and experience joy and have opportunities that enhance quality of life. They need love, care and concern.
And for everything I’ve mentioned, I could likely mention about a dozen more. People with Alzheimer’s disease are first and foremost people. People with a disease. They are not the disease. This is an important distinction.