Tuesday, October 1, 2013

Three Important Actions for Alzheimer's Caregivers

Many caregivers for people with Alzheimer’s Disease (AD) do not learn quickly enough about three important actions that they should take as soon as possible after their loved one is diagnosed with AD.  Were health care professionals to suggest these three actions, caregivers’ lives would be a lot less stressful as they try to provide the best care possible for their loved ones.

The first and most important action that all caregivers should take is to seek out and join a caregiver support group, preferably one that meets on a weekly basis and preferably one designed solely for others in similar caregiver roles.  All AD caregiver support groups can be helpful.  However, if a caregiver joins a “targeted” caregiver group ... such as a group whose members are all spouses of people with AD, or a group whose members are all children caring for parents with AD ... the caregiver can receive more helpful suggestions and information about caregiving from others in similar positions.  Just as or even more important, in a targeted group caregivers can receive the emotional support that is so badly needed from others who are in similar situations ... others who “get it” and can fully appreciate what everyone in the group is experiencing.  Caregivers in support groups soon learn that the course of this disease varies widely, and a common expression one hears is, “If you know one person with Alzheimer’s, you know one person with Alzheimer’s.”  However, there are more similarities than differences, and certainly the caregiver’s relationship with the person with AD ... as a spouse, a child, another friend or relative ... will greatly affect the caregiving process. 

Fortunately, I have participated in a wonderful weekly support group designed solely for spouse caregivers sponsored by the Long Island Alzheimer’s Foundation (LIAF).  In addition, I also participate in an online support group designed exclusively for AD spouse caregivers, at www.thealzheimerspouse.com.   Sadly, no health care professional ever advised me of the existence of such real and online groups.  I had to learn about such groups on my own.  And that must change.

The second important action for all caregivers is to meet with an attorney who specializes in eldercare issues.  The attorney will offer guidance to be sure that all end of life documents are in order  ... wills or trusts, living wills, health care proxies, and durable power of attorney … and, if not, the attorney can prepare such documents.  Caregivers should also discuss a long term health care policy if their loved one with AD does not currently have such insurance.  A policy may now be too costly to initiate or the person with AD may no longer even qualify.  However, the eldercare attorney should discuss such options with the caregiver as part of a comprehensive review.  Once again, no health care professional ever advised me to do this, but we talked about the need to do so in my spouse support group.

The third important action that all caregivers should take is to meet with a certified financial advisor to discuss preserving, protecting and growing current income, investments, and other assets.  This is also another opportunity for caregivers to discuss long term health care policies that may impact other financial decisions.  As loved ones with AD decline, caregivers will slowly but surely discover their need for respite time.  Hiring part-time home health aides, companions, and enrolling loved ones in day care programs will be considered.  As the AD decline worsens even more, caregivers will wrestle with the need to hire full-time home health aides or private nurses, or consider placing their loved one in assisted living residences, nursing homes, or hospice facilities.  All of these decisions have financial implications, and a financial advisor can help the caregiver plan more wisely for the future.  Again, no health care professional ever advised me to seek out a financial advisor, but we talked about this need in my spouse support group.

Caregivers cannot prevent the inevitable outcome once loved ones are diagnosed with Alzheimer’s.   However, health care professionals can empower caregivers by suggesting these three actions ... join a good support group, meet with an eldercare attorney, and meet with a financial advisor.  Health care professionals who do this will enable caregivers to better protect and provide for themselves and their loved ones ... emotionally, legally, and financially.  
Published online in Clinical Geriatrics on 10/1/13. Access at:
http://www.clinicalgeriatrics.com/content/Three-Important-Actions-Alzheimer%E2%80%99s-Caregivers. This same article will be published in the October issue of its sister publication, Annals of Long Term Care.

1 comment:

  1. Hi Allan,

    Loved your post. I shared it on my social media and look forward to doing more of that. I couldn't find your direct contact information so please shoot me an email at phyllispeters296(at)gmail.com.

    I'd love to connect for a potential collaboration. I'm on a mission to raise money through my novel Untethered: A Caregiver's Tale where 100% of the profits will go to Alzheimer's research (see Indiegogo link - http://www.indiegogo.com/projects/stop-alzheimer-s-phyllis-peters-s-untethered-a-caregiver-s-tale-donates-all). I appreciate your work and I've been affected by this firsthand as well - 5 of my beloved relatives have fallen to dementia and Alzheimer's, including my beautiful mother, Jessie.

    Look forward to hearing from you soon,