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Is Knowledge the Caregiving Multi-Vitamin?

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From the desk of Together In This... 

From the time we were kids, we’ve been told that we need a well balanced diet to help maintain our health. However, since most of us don’t follow the recommendations, we take a multi-vitamin. In fact, millions of Americans take nutritional supplements like pterostilbene 50mg to improve their health.

Health Concerns

Caring for a person with dementia is one of the most challenging situations a person can face. Because there is no consistency, everyday comes with a new set of challenges. The emotional and physical demands pose a significant risk to the caregiver’s health. In fact, “Seventy-four percent of caregivers of people with Alzheimer’s disease and other dementias reported that they were “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver”. 1

Since they often find themselves overwhelmed without little to no support, these caregivers struggle to maintain a proper diet, regularly exercise, and take breaks (respite). The best way for them to gain control and move towards a healthier life is to acquire knowledge about their unique caregiving situation.

Reactive not Proactive

Since many caregivers don’t take time to acquire knowledge, they are ill-prepared for the challenges and find themselves reacting and “flying by the seat of their britches”. With no training, they do their best to cope with the disease but this approach consumes their mental and physical capacities. This results in no time for them to proactively develop strategies to deal with the situation.

Knowledge is the supplement that will empower them to make better decisions and bring order to chaos. They will be able to develop strategies which include things such as behavioral-coping mechanisms, planning for the future, and organizing their loved one’s state of affairs.

Getting Started

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Caregivers often don’t know where or how to start. They find themselves frantically searching cumbersome websites or asking untrained friends and family for advice.

The easiest way to start is by visiting TogetherInThis.com which provides streamlined information and a Publications Library. From this library, caregiver’s can download specially selected pamphlets for free. If the caregiver can’t find the appropriate pamphlet here, they can visit the National Institute on Aging site which has a larger library – many of which can be mailed directly to their home for free.

Sometimes, there’s just no time to read and that’s were audio files can help. The caregiver can download these files and listen to them while commuting, exercising, etc. Johns Hopkins Medicine features a handful of audio files and Blog Talk Radio has a wide selection of which the caregiver might like to start with these: Alzheimer’s Speaks or Your Caregiving Journal.

If the person is more of a visual-based learner, there’s an abundance of videos that can easily be found through a simple internet search. Youtube is a good place to start and I recommend starting with Sue’s very own Dementia Queen channel.

Informed Support

As previously mentioned, people often turn to family and friends for help. While their support is a needed supplement, they generally don’t have the expertise to provide the proper guidance when caring for someone with dementia. This is why it’s best to gain additional knowledge from others that are also caring for someone with dementia. Their experiences and support are an essential supplement to the educational process. Start by contacting the Alzheimer’s Association who can identify local support groups.

As you can see, there are multiple ways a caregiver can consume their educational multi-vitamin. This supplement is essential to good caregiver health and should be taken on a regular basis.

What resources have you used to educate yourself or other caregivers? Please share your suggestions.

Author:  Mike Good, Together In This .com

1 Alzheimer’s Association, 2014 Alzheimer’s Disease Facts and Figures, pg. 37

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7 comments

  1. I’m looking forward to hearing any ideas, suggestions, or comments. And thank you TDQ for allowing me to share with your audience of wonderful people.

  2. Mike – another great post.

    Knowledge provides options and recognition that people caring for someone aren’t alone on the journey. Becoming empowered to make informed preparations and account for their own care is the biggest way they can serve the one with the disease.

    If the family doesn’t stay healthy (physically, mentally, emotionally, even spiritually) they will only reduce their ability to care for the one they are loving trying to help. There can be highlights along the journey, yet if consumed with trying to figure it out as they go, these can be missed which reduces the ability to build memories that can be shared for generations.

    Until people become literate (not expert) in all seven of the domains so they learn what questions to ask and who to ask, they are not fully prepared for the best journey possible. Would they take a trip to some foreign land without fully preparing for all the possible outcomes and learn the best path possible? Why do it with someone you love?

    You must be literate in ALL domains to reach best conditions that preserve safety, social welfare, health,
    resources and dignity of an aging individual.

    1. Health & Healthcare
    2. Insurance & Benefits
    3. Financial Resource Management
    4. Estate Planning
    5. Social/Spiritual Relationships
    6. Life Care Planning (physical & cognitive impairment plan)
    7. End-of-Life Care Plan

    I really hope this gets to the people who are just learning this is an issue for them, and that it is shared widely so more learn what’s ahead so they can know it’s available. So many are clueless and struggling. Thank you for helping to “life the veil” for more to prepare.

    Marshall Stanek
    “Long Distance Caregiver” of my two parents

    P.S. I’ve posted the link to the 211 Senior, Caregiver, Boomer calendar of events in San Diego County, which also includes links to agencies available to offer support services. Please feel free to share this widely, too.

    • Thanks for the comment Marshall. Good stuff.

    • Marshall, as you know the biggest challenge is finding these caregivers who are too overwhelmed to seek answers. My goal is to find them, teach them “what they don’t know they need to know, and help move them back to a proactive experience. They need to be able to have fun experiences with their loved ones while they still can but if they are in a state of chaos, the experience is draining. Thanks for your support!

  3. Jenny Henderson

    Hi I have experience of knowledge empowering relatives whose families are in long term/hospital care. I wrote a three day course on palliative and end of life care for people with dementia. The key themes were living well as well as dying well and communication was seen as a link between all the topics . Relatives attended the course together with care staff. Recruitment of relatives was an issue but it was often the reluctance of the care staff or their paternalistic attitude that some relatives would be unable to cope. The impact of this type of training was huge in achieving change in practice and a common understanding of the challenges of caring for people in the later stages of the illness

    • You are so right, Jenny. Communication is so important to providing the best care and protecting the health of everyone. So many caregivers do so in a vacuum. First we have to get them to the training which is a challenge in itself but once we do we need to remember to push for family involvment.

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