Alzheimer’s awareness: Tips for caring for your loved ones
It is estimated that there are more than 500,000 new cases of Alzheimer’s disease diagnosed each year. What should you do if this statistic becomes the reality for your family?
Dr. Roy Schutzengel, medical director for Adventist Health Physician Services, is currently one of many Americans who cares for a family member with this complicated disease. Dr. Schutzengel offers his experiential insight to help open the conversation to a journey of care for your loved one:
With a diagnosis of Alzheimer’s, the specific pathway that the disease will take may vary from person to person. However, progression of the disease is inevitable and assistance will eventually be required. Planning ahead with all family members is important during the early stages, giving the diagnosed individual the opportunity to express his or her wishes for care and to be involved in the decision-making process. Understanding the progression of the disease and planning ahead is not demonstrating a lack of faith, but rather a chance for families to evaluate options and respect the wishes of their loved one while the individual diagnosed is able to actively participate. After a life of independence, your loved one deserves the opportunity to express their desires in the face of illness as well as health.
As an individual with Alzheimer’s begins to experience the symptoms that accompany the disease, there will be a time when alternative living arrangements are needed. When someone accustomed to being independent must now rely on others, they can experience a sense of loss and the transition may be highly emotional. Dr. Schutzengel’s mother-in-law came to live with him and his wife six years ago when she was no longer able to live alone. Although there are challenges along the way, Dr. Schutzengel relates that it is a “privilege and not a burden” to care for her. He believes that there are treasured moments they have been able to experience with her because she was in their home and not in a healthcare facility.
However, Dr. Shutzengel stresses that it is a highly personal decision to care for a family member at home and that we owe it to our loved ones to make the best decisions. There are physical, emotional and economic factors that must be considered when selecting the best care option for a loved one with Alzheimer’s. When the need for assistance becomes evident, providing a safe, comfortable environment should be the main focus for a caregiver. If plans have been made in advance, the family will know if the loved one will transition to a facility or live with a family member, and be adequately prepared for either scenario. The ability to provide continual care and supervision as well as a comfortable living space will need to be evaluated if a decision is made to care for the individual at home. At some point, physical barriers such as gates or alarms may also need to be considered in addition to medical equipment to support activities of daily living. If the plan is to consider assisted living, specialized care facilities or home health providers, families have the time to research these options by preparing in advance.
Address emotional needs.
When caring for a loved one with Alzheimer’s, whether at home or in a medical facility, it is important to remember that they are still the same person they have always been. Surrounding them with familiar loved items and encouraging previous interests can continue to bring joy and provide a sense of comfort to the individual living with the disease. Establishing routines early in the caregiving process will help to relieve stress and assist the individual in adjusting to the new lifestyle. However, flexibility is also required—as what may have been a successful system one day may need to be adjusted the next, especially as the disease progresses. At times the individual may exhibit behaviors that were not usual for them when they were healthy. Ensuring that the individual is always treated with respect and dignity is an important way of showing love during every stage of life, including this time of illness.
Communication brings additional challenges when caring for an individual with Alzheimer’s. As memory lapses and confusion increasingly play a role in the communication of an Alzheimer’s patient, it is important not to contradict or correct faulty thinking. Go along with the stories, providing words of reassurance and comfort to relieve stress when the perceptions are not accurate.
Build a support system.
Caring for a loved one with Alzheimer’s is a deeply personal experience. No amount of planning or suggestions can fully equip one for this journey. Know your limits and seek the support of others. There are many support organizations within the community or the internet, which can provide resources and the shared experiences of others exploring the same path. It is important to develop a network of those who will stand along with you. Identify others who can provide respite care to allow you time away. Whether you care for someone with Alzheimer’s who is in your home or a healthcare facility, it is a labor of love, where the smallest things can often bring the most joy.