By Vanessa Bradden, LMFT,
Founder and Clinical Director at Lakeview Therapy Group
Did you know that September 21st is World Alzheimer's Day? It is a day intended to increase our understanding of Alzheimer's and other forms of dementia and diminish the stigma associated with it. Globally, more than 55 million people are living with dementia, and it is estimated that 10 million new cases are diagnosed each year. The number of people with dementia is expected to increase to 139 million by 2050.
Most of us have been affected directly or indirectly by dementia and know that it is a painful, often lonely journey. Receiving and processing a dementia diagnosis is a significant life transition that needs more attention. It is grief work for the patient and the loved ones around them. And like any loss, it is not a linear process. There is denial, anger, bargaining, depression, and acceptance, which oscillate depending on the day. The feelings associated with such a loss can be paralyzing, overwhelming our ability to cope well.
As marriage and family therapists, we understand that the patient is part of a more extensive system – family, friends, and co-workers. We also know that stigma is an obstacle, imposing shame and making it harder to focus on what needs to happen to adapt and keep a good quality of life. The stigma around dementia can result in premature outcomes if we decide that patients cannot do anything on their own because they have dementia. We all benefit when we encourage diagnosed individuals to use as many capabilities as possible, if they are safe.
Stigma and Its Impact
For those directly affected by Alzheimer's and other forms of dementia, life changes in ways that are scary and unpredictable. The progressive nature of the disease can alter parts of our loved ones who were once vibrant and productive members of their families and communities. It is a startling moment when you realize someone you know and love is struggling with pieces of their ability to remember things you experienced together or, even more alarmingly, your name and who you are to them.
Fear of the unknown is difficult for all of us. However, if left unchallenged, it perpetuates stigma around the disease, making it hard for everyone to get proper care and support. Raising our awareness about Alzheimer's disease is one of the best ways to deflate the stigma that negatively affects patients and their families.
Stigma is a significant concern facing patients and families living with dementia. Many report feelings of abandonment, isolation, and infantilization. Our fear of dementia can cause us to back away from someone when they need us the most. For some, it is a fear of not knowing what to say or do, or more selfishly, an inability to cope with the changes that will happen over time. Either way, it further worsens feelings of loss.
Reducing Stigma
Marriage and Family Therapists are the pioneers and leaders of systemic therapy. We think that the individual is more than the sum of their parts, and we value finding strength-based solutions rather than those that enforce stigma and isolation. We believe nothing happens in a vacuum, and effective treatment comes from looking at the broader context of what is happening with the individual and those closest to that person. With staggering numbers projected for the future of Alzheimer's, it is crucial to reduce and even end its stigma.
Educating yourself and those around you about dementia is one of the most effective ways to reduce stigma. Be direct and factual about what is happening. Being direct can help set expectations for others while also empowering ourselves as advocates of our lives. Being open and honest with others can help people better understand what you are facing and take the pressure off them not knowing what to say or do to help you.
How Marriage and Family Therapists (MFTs) Can Help
Marriage and family therapists (MFT) have a unique skill set and know how to work with individuals, couples, and families. They support everyone in the family system, making processing loss more manageable. Grief work is complex, and there is no easy solution. Each person's experience is essential; tensions can run high in the family, and old wounds can get triggered. Working with an MFT provides an added level of support for everyone.
Medical Advances Give Us Hope
While we search for a cure for Alzheimer's disease, we must hold onto hope. The National Institute on Aging (NIA) is the leading agency supporting and conducting Alzheimer's disease research, and their unyielding support continues to push researchers toward more effective prevention and treatment protocols for dementia.