Mike Good, founder of TogetherInThis.com, is passionate about helping caregivers manage the challenges and unique needs of loved ones with Alzheimer's. Here, he discusses his site while offering advice to caregivers on finding resources and assistance in caring for Alzheimer's patients.
What is the story behind "Together in This"? What prompted you to start the site?
My path to creating Together in This as a resource for Alzheimer's and dementia caregivers started when I left my career to follow my passion of helping people with unique and changing needs.
To educate myself, I attended healthcare conferences, seminars, classes and other events in my local community. I kept hearing about this disease called Alzheimer's, and I kept meeting people who were being identified as caregivers for someone living with dementia.
As I continued to listen to their stories, something was tugging at me. It was during this time that every ounce of my focus turned to Alzheimer's, because I realized how many people truly need help and how could I turn my back on them?
From there, TogetherinThis.com was born with a mission to help families find tactical information and tools to make their situation easier.
What are the most common challenges facing caregivers of adults with dementia?
Finding practical information and training that answers questions specific to their unique needs is a huge and recurring hurdle.
Nobody hands the family a training manual. They are thrust into possibly the most complicated caregiving situation without any guidance or support.
They turn to the internet, but the vast amount of information is daunting, and often too clinical or too specific to someone else's experience.
That's why I've spent hundreds of hours researching to provide streamlined information that provides a tactical, how-to approach which benefits the busy and overwhelmed family caregiver.
What are the most common mistakes or oversights these caregivers make?
Not seeking support from family, friends or the community is at the top of the list. This is stems from not understanding how much energy and strength it takes to properly care for a loved one with dementia.
Trying to "fix" their loved one and not accepting the disease is also a very common problem. This is generally pointless since their brain is literally damaged.
This caregiver will try endlessly to correct their loved one or remind them of things. This only leads to frustration, anger, and turmoil between all individuals. Caregivers must learn to accept their loved one's reality and go with it instead of fighting it.
At what point should a caregiver enlist help when assisting someone with dementia? Where should they look for this help?
I believe they must start immediately before they get so consumed that they don't have the energy to find help. They should start by sharing the diagnosis with family, friends and even neighbors; people can't help if they aren't aware of a person's needs.
Also, each community has its own caregiver support system for people with Alzheimer's or other dementia. I recommend starting with a search of aging services in your zip code. Consider stopping by the local senior center and asking the staff for information on local services. This is such an important topic that I have page specially dedicated to helping caregivers find support.
What are some of your favorite resources for caregivers, (books, blogs, workshops, community programs, etc.) who are helping people with dementia?
I'm a big proponent of having information you can carry with you, throw on your coffee table, or hand to someone. The National Institute on Aging (NIA) has a lot of these invaluable resources which can either be downloaded or delivered to your home for free.
Getting support from people who are walking in your shoes is the best resource. Most communities also have support groups. Caregivers are going to feel alone because others don't understand what they are dealing with. But at a support group, they are with peers who can relate and best support them.
What types of self-care should full-time caregivers be doing in order to stay healthy for their loved one?
The health and well-being of the person caring for someone with dementia is at high risk due to all of the physical and emotional demands. Caregivers must find ways to get away and have some "me" time. They must do things they enjoy; otherwise they will feel trapped and resentful.
Sometimes these things can be mutually beneficial if done together with their loved one. Things like taking a walk, gardening, cooking or dancing can be therapeutic for both individuals.
What special considerations do caregivers need to make when making a residence safe for a dementia patient?
Sixty to 80 percent of all people with dementia are cared for in a private residence, so this is an important topic to address. The goal is to find a balance of safety and joy for a loved one with dementia. I like to call it "Making your home Alzheimer's friendly." Even without dementia, as we age our homes become less friendly in meeting our changing needs.
The family should focus on four elements of the home: safety, functionality, creating a stimulating environment and modifying the environment to reduce behavioral triggers.
By observing how the person with dementia interacts with their environment, these four elements can be addressed.
What can and should caregivers be doing for dementia patients to help make sure their lives are fulfilling and satisfying?
The goal here is to minimize the use of medications which generally lead to sedation and other issues which have a negative impact on the well-being of the individual. Through observation, listening and understanding, the individual's quality of life can be maximized. This starts by knowing the individual and seeing things from their perspective.
You want to understand the individual's unique needs, interests, dislikes, abilities and life experiences. This helps the caregiver provide activities and conversation that creates meaningful engagement for the individual.
But you also have to remember because the brain is damaged, their preferences may change so the caregiver needs to stay flexible and creative.