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Family Dynamics in Dementia Care

Ellen Belk - March 09, 2016 03:11 PM

The Alzheimer’s Association’s 2014 Facts & Figures indicate there are 15+ million family caregivers providing support to a loved one with Alzheimer’s or other Dementias.  I’m respectfully skeptical of that number, as I believe that calculation is probably much higher.  I think it’s common for many to go undiagnosed because too many in society still believe that being ‘forgetful’ and losing ‘memory’ is a normal part of aging. We have a long way to go, to educate the masses and alleviate that myth.

However, for those of us in the throes of providing Dementia Care to a parent, spouse, relative or loved one; we are very familiar with the ‘not normal’ side of this journey. 80% of all Dementia Care is delivered by family and close relatives. To date, ample resources and support in many pockets of our country are difficult to access, hard to come by or even non-existent.

Therefore, the heavy burden of delivering care falls onto the shoulders of those family members who step up and answer the caregiving call. Typically, in many instances, one person takes on the ‘Lions’ share of the responsibilities which can lead to exhaustion, burn-out and health repercussions for them.

We’ve heard the adage, that it takes a ‘village’ to raise a child. Yet, we haven’t embraced the idea of; it takes a ‘team’ to provide quality Dementia Care.

Speaking with many family caregivers, you’ll hear stories of how their inner-circle of family and friends often disappear, once the Dementia is significantly noticeable. Neighbors, co-workers, peers, community – that were present in the person’s life before diagnosis, often fade away once the challenges really begin. Thus, creating a perfect storm of isolation and lack of support for both the caregiver and the person with Dementia.

Look inside the family dynamics and commonalities tend to emerge. It’s a painful realization for most caregivers; that although they may share DNA with members of their family; that certainly doesn’t translate into having shared caregiving hearts. A caregiving heart is often broken many times over by those members of the family who cause turmoil during a time when compassion, kindness and consideration are the necessary responses.

Denial: These are the folks that refuse to accept the changes are real. For whatever reason, they are unable or unwilling to admit that Dementia is present and that a new ‘reality’ is emerging. Their lack of awareness can lead to rifts between themselves and the family member delivering care.

The Know-it-All: These are the family members that often provide minimal caregiving support yet somehow always seem to have an answer or solution for everything. And, too frequently, their solutions are misguided and not attainable, since they truly don’t have the scope of understanding to make informed suggestions.

The Disappearing Act: These are the people that tend to evaporate from the scene when the going gets tough or uncomfortable. They are conveniently unavailable to lend a hand or support when it’s most needed.

The I’m-too-Busy: These members of the family place their hectic lifestyles above the rest as if no one else had a ‘life’ prior to the Dementia diagnosis. This member continuously has excuses for why they can’t step in and lend support which often leads to hurt feelings and widens the gap between families.

The Angry Person: These folks somehow find a way to make the Dementia diagnosis all about them and how unfair it is that this is happening to their parent, spouse, sibling, etc. Consumed by their anger, they become a toxic presence and are unable to provide necessary assistance, even when called upon.

Yet through it all, caregiving still happens each and every day in places near and far. From big cities to remote mountain towns, there are family members who rise to the occasion and are doing their very best to provide compassionate Dementia care to someone they love dearly.

10,000 Baby Boomers a day are turning 65.  One thing we know for sure, is that although Dementia is not a ‘normal’ part of aging; aging is the number one risk factor for Dementia. The 15+ million who are currently providing care, won’t be sufficient for the millions more who will shortly need care themselves.

Ask yourself, what type of Family Member are YOU going to be?

Ellen Belk, CDP is President of Keep In Mind Inc.® specializing in holistic Dementia care solutions and caregiving resources.  With over 15 years of professional Dementia care leadership; Ellen is known for her operational expertise, executive leadership development, creative activity initiatives and caregiver training. She authored the 360° Dementia Care Operational Manual™ for professional Dementia care partners who seek a comprehensive operational tool that exceeds industry expectations.

Your Answers and Comments

Susie K. Adams on Mar 10, 2016 12:16 PM
Thank you, Ellen, for your powerful column. I pray it will be a great help to others; especially an awakening to those friends and family members who are uncomfortable and unable to respond to the needs of a family coping with Dementia care. I will forward this good article in the media. Thanks, again. Susie Kinslow Adams

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