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When you ask people what living well means to them, you will get an array of answers. For some, it’s about being happy, for others it’s about their health.
But for the family faced with Alzheimer’s disease or other dementia, it takes on a whole new meaning — living well is vital to delaying the progression of the disease.
It Takes a Team
It is possible for a person with Alzheimer’s and their family to live well. But it requires a team effort implementing different strategies based on the person’s abilities and needs throughout the stages of the disease.
Because the primary care partner, generally a spouse or adult child, must stand beside the individual throughout the disease progression, their well-being often also erodes, if left unchecked. Therefore, a family’s care strategy for a person with Alzheimer’s must include the primary care partner as well.
Adapting these strategies as the disease progresses is essential for the family to remain strong during all stages of Alzheimer’s disease.
Fighting Back
One of the first major hurdles of Alzheimer’s caregiving is overcoming the initial emotions, which often lead to depression, and subsequently, both social and emotional isolation. Too often, depression and fear take hold, and the care partners withdraw from family, friends and society.
Isolation accelerates the progression of Alzheimer’s disease. Once a person becomes cut off, they start to lose their sense of purpose. Having purpose is critical to living well; whether it’s family, a cause, or a hobby, this purpose is why we get up in the morning.
Out of the Closet
Once an Alzheimer’s patient learns to manage their emotions and realizes they have a disease which is no different than diabetes or breast cancer, they become more comfortable in sharing their diagnosis and talking about it, when appropriate.
However, like cancer or HIV of the past, the general public has many misconceptions about Alzheimer’s disease. Some think the person is crazy while others act like it’s contagious. This ignorance can be hard for the care partners to overcome.
But as they share their Alzheimer’s diagnosis, others will come to understand that the person with Alzheimer’s is the same person they have always been. As a result, these friends will often rally around the person, which helps the family maintain the social aspect of living well.
Taking Back Control
The ability to make decisions is important to a person’s individualism. The family, who now understands that a day will come when this won’t be possible, realizes that planning for the future will help protect their long-term wishes.
They start accomplishing this by getting important documents in order. Knowing that all legal, financial, and medical situations will be properly handled when the need arises creates a peace of mind.
Living Life
Now that things are getting under control, the family looks toward enjoying life. Sure, they will look back at how life used to be, but they are learning to live for today.
Things previously taken for granted are now cherished. Ironically, happiness and newfound purpose are often a result of this process.
Holistic Approach
A new conviction that people with Alzheimer’s disease can fight back and lead successful lives for years, if not decades, has become a driving force. Knowing that things such as exercise, nutrition, socialization and intellectual stimulation are imperative in delaying the progression of Alzheimer’s motivates the family to incorporate these elements into their daily life.
The family is now prepared to live well with Alzheimer’s disease.
Do you know someone living with Alzheimer’s? Are they living or living well?
Sources:
Caregiving Requires Compassion and Strength -- For Yourself Too. EmpowHer.com. Retrieved May 17, 2015.
https://www.empowher.com/caregiving/content/caregiving-requires-compassion-and-strength-yourself-too
Involving Family & Friends in a Diagnosis of Alzheimer’s. Together In This. Retrieved May 17, 2015.
http://togetherinthis.com/involving-family-friends-in-a-diagnosis-of-alzheimers/
About the Author: Mike Good is founder of Together in This an online resource helping family members caring for someone with Alzheimer’s. Through short, informative articles and easy-to-use tools, such as the Introductory Guide to Alzheimer’s, he helps them take control and have peace-of-mind they are doing the right things.
Reviewed May 18, 2015
by Michele Blacksberg RN
Edited by Jody Smith
Add a Comment8 Comments
Hi Mike,
I am only at my 30's but I can sense that I could have alzheimers when I get old. At my age I do forget many things. I even forgot my friends and auntie's name.
June 21, 2015 - 7:13pmThis Comment
Hi, there are many things that cause us to be forgetful - multitasking, medications, vitamin deficiencies, etc. Alzheimer's at such a young age is rare. I recommend making a log of all of your medications including over the counter, prescription, supplements, etc. Include your dietary intake as well. Talk to you doctor about your concerns and share this log. Many forms of dementia are treatable.
June 22, 2015 - 8:40amThis Comment
You may also like to read the book by Jacques Boersma, who was diagnosed with Alzheimer's in 2011 and is still going strong.
June 1, 2015 - 4:16amThis Comment
Thank you for sharing.
June 11, 2015 - 10:38amThis Comment
I also think exercise important, and posted video at Dementia Mentors on subject. Also on youtube at https://www.youtube.com/watch?v=Fcv-CtYdrwE
May 31, 2015 - 9:24amThis Comment
Yes, I agree - exercise is valuable in many ways; not only is it good for the body but often times it also has a social and/or spiritual element. Thank you for sharing the video which demonstrates this! Dementia Mentors which you mentioned is a great organization for people with dementia to find support from others who have dementia. This is another great element of living well with the disease.
May 31, 2015 - 5:23pmThis Comment
Thank you for sharing this. I totally agree w exercise! Since I started a regular exercise routine, I feel better physical and mentally and I do not seem to have as many Dementia Daze Days. More days of "I can see clearly now", Rather than "Blue, Blue My World is Blue">
May 30, 2015 - 2:12pmThis Comment
Thank you for sharing about how exercise has helped you fight back against dementia.
May 31, 2015 - 5:24pmThis Comment