Alzheimer’s disease and dementia are some of the most life-changing diseases, and they affect the patients as well as everyone around them. The National Alzheimer’s Association found that, in 2016, nearly 15 million caregivers provided free care to patients diagnosed with dementia or Alzheimer’s. Those caregivers are most often family members, spouses, or neighbors.
The strain of caring for another individual can be immense. Nearly half of family caregivers said that the process causes high levels of stress, and most of them will provide this care for 4 or more years. Learning how to cope with the difficulty of being a family caregiver is important to maintaining the mental and physical health of both the caregiver and patient. But this process can be a 2-way street. Those diagnosed with Alzheimer’s or dementia can take steps to ease the burden on both friends and family, while learning to cope on their own in the early stages of the disease.
Important Things for Family Caregivers to Know
The main difficulty in caring for a loved one with Alzheimer’s or dementia is the disease’s impact on the patient’s ability to communicate or remember. These changes can make the simplest of tasks aggravating for the patient, requiring patience from a family caregiver. This need is also an example of why it is so important for caregivers to understand the effects and causes of the disease. Understanding why and how a loved one is being affected can make it easier to cope when caregiving becomes frustrating.
Arguing with the patient is absolutely not recommended. This will only increase the tension of the situation and add stress to a loved one who is already suffering. Empathizing with the patient is key. Understand that the mood and personality changes caused by dementia is the fault of the disease—not your loved one.
Establishing routines and creating a predictable schedule are also good first steps when beginning to care for a loved one. Even activities as simple as folding laundry or washing dishes can be done together and help a patient feel a sense of purpose. Daily exercise or walks can also prevent a loved one from wandering as their condition worsens.
Holly Hart, L.V.N., director of residential health services at Claremont Manor in Claremont, California, says that those suffering from memory loss “thrive on familiarity.” Routines are adopted as touchstones, comforting patients with Alzheimer’s as things become less familiar. Additionally, a predictable routine can also help mitigate changes in personality and behavior.
Despite how dementia and Alzheimer’s may affect personality or memory, your loved one is still the same person they were before the disease. It is important to learn how to maintain communication with the patient in order to keep them cognitively stimulated and able to interact with others.
Communicating With a Loved One Through the Stages of Alzheimer’s or Dementia
All humans generally require social interaction to lead a healthy life. The same holds true for those suffering from dementia. However, when caring for someone with dementia or Alzheimer’s, communication can present specific challenges depending on how far the disease has progressed.
A person suffering from dementia may have difficulty organizing thoughts into sentences or remembering simple words. Sometimes a patient may use hand gestures or a native language to communicate. Adapting to these changes and paying attention to a patient’s body language can create a better sense of communication between a caregiver and patient.
In the early stages of dementia or Alzheimer’s, it is important to remain respectful to the patient. They require a certain degree of independence, especially during the initial stages of the disease. Avoid completing a loved one’s sentences if they get stuck on a word, and never assume that a patient’s ability to communicate has been impaired. Give them time to respond to questions, and maintain eye contact while conversing. Also, a caregiver should not try to hide conversations about the disease from their loved one. Allow them to be part of the conversation when it comes to their disease—this involvement will give them a sense of control.
The middle stage of Alzheimer’s can sometimes last for years, and the patient will require more direct care. Visual cues, yes-or-no questions, and even written notes can be invaluable for communication during this stage of dementia. Avoiding arguing or giving specific instructions are also important steps to take. Complicated instructions and requests may be overwhelming for the patient, so step-by-step guidance will be necessary to help them complete tasks. Minimizing distractions while speaking to the patient can also help them understand.
In the late stages of Alzheimer’s, it is important to remain respectful of the patient. Avoid surprising the patient from behind—approach from the front, and identify yourself before speaking. Speak clearly, slowly, and calmly, as a raised voice or fast conversation may trigger aggressive behavior in the patient. Other environmental factors may also spark these changes in behavior, so it is advisable to keep the patient away from large crowds or overwhelming situations.
As the condition worsens, the patient may begin to believe loved ones who have passed are still alive, or that they are currently living in a different time or place. Adapting to a loved one’s altered sense of reality and “playing along” with nonharmful delusions can ease the stress and anxiety a person with dementia feels. Remember that these symptoms are out of the patient’s control, and even though it may feel disrespectful to play along with a loved one’s delusions, it is comforting to the patient. In all likelihood, no amount of discussion will change the patient’s mind on the matter. Avoiding these unproductive conversations will lessen the strain on both the patient and caregiver.
Ultimately, a patient’s emotional well-being is more important than the words they are saying. Focus on their feelings, and work to remind your loved one that they are safe and being cared for.
What Patients Can Do to Cope
When first receiving a diagnosis of either dementia or Alzheimer’s, the patient can take proactive steps in advance of the care they will need. Making an inventory of legal and financial documents should be one of the first steps taken after receiving a diagnosis. An early diagnosis means the patient will have the opportunity to participate in future care needs. One such opportunity might be enrolling in drug trials that may treat the disease.
Living on one’s own with dementia and Alzheimer’s can be a difficult experience. Throughout the early stages, one may still be able to maintain their way of life, but patients should always be open to the concerns of friends and family. Falls, wandering, forgetting to eat, or an inability to drive can all limit one’s ability to live alone with Alzheimer’s, so it is important for patients to make decisions now so their wishes for future care needs are known.
Patients can also help friends and family adjust to their diagnosis. Participating in early stage support groups and having frank conversations with a spouse or future family caregiver can help ease a patient’s entire support system into their roles. As the disease progresses and one becomes less independent, it is important to have a care plan set in place.
How Family Caregivers Can Avoid Burnout
Each case of Alzheimer’s disease is unique; therefore, it is difficult to predict how a loved one will react to the disease. It is equally difficult to predict how the process of caring for a loved one will affect a family caregiver. Given the high prevalence of stress and depression noted by those who care for family members with Alzheimer’s, it is important for caregivers to focus on their own health.
Take time for rest and relaxation away from the struggles of caring for a loved one with Alzheimer’s. Try rotating family caregivers so there are multiple people who can care for the loved one in case of an emergency. Again, it is important to stress that dementia and Alzheimer’s do not destroy a patient’s sense of self. Despite being impaired, a loved one is still the same person they were before the disease, and they should be treated as such.
Caregiver support groups can teach you about coping strategies, and in-home nursing care can also help bear some of the burden. A regular routine can help ease the load. Building time into your schedule for breaks away from your responsibilities can help you maintain a safe, individual space.
Asking for help while taking care of a loved one and having a plan in place for long-term care are other important steps. If the caregiver knows they are not alone in the situation and a plan is in place for times when the caregiver becomes unable to provide care, that will become one less struggle to contend with.
Dementia and Alzheimer’s can have a profound impact on those who suffer from them as well as their families. But with careful planning and a knowledgeable support system, caring for loved ones with these diseases can be easier for all involved. Nearly 5 million people currently live with this disease. Proper care can give Alzheimer’s patients the best environment to cope with their disease, and education helps a caregiver maintain the patience required to handle this difficult situation.