By Paula Camposano-Robinson, RN
Dementia, and Alzheimer’s disease, which is one of the most common forms, is predicted to affect 1 in 85 people globally by 2050. It also may be among the most costly diseases for society to treat. Anyone who is diagnosed with dementia suffers, but as painful as this is, the patient’s loved one(s), i.e. spouse, mate, children, grandchildren, friends, and the list is endless, suffers with them, and sometimes suffers more through caring for them and watching them deteriorate. Children or spouses have to become the “parent” and the adult becomes the “child.” It’s the full circle of life, but it’s so much more difficult with dementia!
This leads many people to live in denial, and then if they finally figure it out they feel guilty. It is difficult to know who is suffering the most, but both parties are physically and emotionally shattered. In the early stages, the patient often knows he or she is “forgetting” and “repeating” things, leading to frustration, depression and loss of self-esteem. On the other hand, the patient’s loved one(s) often are still in “denial.” Without professional help, or guidance everyone is now “lost” in the world of this horrific disease.
As was noted above, in the early stages of the disease it is likely that when a person suffering with dementia says something that is nonsensical or not connected to reality as we understand it, family and loved ones immediately feel an urge to correct them (or worse), argue, to try to get them to be rational. This is not possible for a patient with dementia or Alzheimer’s because they are no longer living in a rational world. We need to begin to live in the dementia patient’s world and try to understand it from their perspective.
Dementia is not a part of normal aging! Here are a few key points to remember when you are trying to help someone suffering from dementia.
• Accept your loved one (patient) unconditionally, as they continue to change (decline) over time, knowing they are doing everything they possibly can do. Do not blame yourself or your loved one – the disease is not going away, nor will it get better – it will only get worse and the sufferer will act differently.
• Never be afraid to show your feelings or to seek outside support to get through this loss. The person you once knew is no longer there you believe, and it’s easy to feel angry, but inside that person is there, trapped with their mind distorted; continue to respect them – they cannot help what they are doing or not doing, and they need you to understand this and keep all of the wonderful memories of them alive. They may not be able to communicate, but most often they can hear you until the very end of death.
• Get help early at any signs that you may suspect this disease. We are all living longer; learn about the disease and do not wait until you have a crisis; it makes any transition for the patient and loved one so much more difficult. See a physician who specializes in these disorders; a gerontologist or neurologist who is current on memory impairment diseases. They are often misdiagnosed!
Get Early Detection: February 15th, Memory Mobile: Free and confidential Memory Screenings and/or get questions answered. Wesley United Methodist Church, 350 South Barfield Drive; 10 AM – 4 PM. Appointments suggested but not required. RSVP to Catherine at 239-405-7008.
Seek Outside Support: The Alzheimer’s Association Florida Gulf Coast Chapter affiliate support groups are for family members, caregivers, and others interested in learning more about Alzheimer’s disease.
Meetings are open to everyone and free of charge. Support group facilitators have received training as required by Chapter and National Alzheimer’s Association standards. For program information and to verify meeting dates, times, and locations, please use the telephone contacts listed below. For other questions or for respite care information so you can attend a group, call your local office or 1-800-272-3900.
Saint Mark’s Episcopal Church, 1101 North Collier Boulevard, Marco Island, 239-394-8097. Last Monday of the month at 10:30 AM. Facilitator: Shirley Woolaway.
This meeting has breakout sessions for both the caregiver and the person with memory loss. This group also has respite service.
Paula Camposano-Robinson and Richard Robinson operate Sanitasole, a senior services facility on the island. Dementia is one of the conditions many of her patients struggle with, and she has years of experience helping them, and their family members, manage its symptoms as effectively as possible. This month, the Alzheimer’s Association is sponsoring free mobile memory screening. Sanitasole is bringing the Memory Mobile to Marco on February 15th at Wesley United Methodist Church from 10 AM to 4 PM. In light of that, Coastal Breeze asked Paula to share her considerable insight on the disease in a guest column.