Coping with Dementia: Many resources exist for caregivers

Caring for a person living with Alzheimer's and dementia can be a stressful and exhausting task, and hands-on care for your loved one is only a portion of that task. It also involves finding information, resources, services and support that can help you become a better and less stressed caregiver.

When I was caring for my husband, Albert, who died of dementia in 2010, I found the search for help frustrating and difficult; sometimes infuriating. I even wrote a long letter describing my needs and problems to my state senator's office, and received no helpful reply.

Nearly a decade later, the task remains difficult, but the internet has made it easier. What I want to do in this column is provide resources where your fingers can do the walking. This is the slogan we used to use for the Yellow Pages (remember those?), but now I am referring to your fingers going to your keyboard. I will recommend some very helpful websites, beginning with national and moving to local resources.

Let me first suggest that you go to the website for the National Institute of Health (www.nih.gov). This website provides a wealth of information. At the top of the page is a button titled "Health Information," which will lead you to a drop-down menu that includes a search feature. Write in the box "Alzheimer's and dementia" and you will be directed to a long list of useful articles on the subject.

In conducting this kind of search, you will need to try to focus on the kind of information useful to you, because you can get lost in medical minutia that goes far beyond your need to know as a caregiver. I tell caregivers that you need to have a basic understanding of what is happening to your person with dementia, but you should never forget that your job is to care for the person, not become a medical expert on the disease.

In the NIH drop down menu you will also see a button that says "Health Services Finder." This will take you to a separate website called Healthfinder.gov. There is also a button that says "Clear Health from NIH" which will take you to a page with links to information about caregiving for Alzheimer's. You can also order many free publications through the NIH website.

There is also a lot of helpful information on the National Caregiving Foundation's website (www.caregiving.org). For Alzheimer's and dementia, they offer a free support kit, which is a very substantial ring binder that can help you become informed and stay organized. It is free!

The Alzheimer's Association website (www.alz.org) is an excellent source of information with lots of useful statistics and articles. I find that this site is very good at covering tough and complex topics in a way that we laymen can understand.

For example, one of most common questions I get is "Is Alzheimer's hereditary?" The simple answer is "yes," but this answer is way too simple and can lead to unnecessary fear or concern. The full answer is far more complicated, and this site explains it better than I have seen anywhere else.

I can't say enough about Teepasnow.com. Teepa Snow is a leading dementia theorist and practitioner that I have studied under, and in my opinion, she teaches the highest and most-effective standards of care available today. What is great about Teepa's site are her videos that explain and demonstrate her techniques of compassionate care. You can also find these on YouTube.

Individuals living with dementia lose manual dexterity, peripheral vision, and other sensory abilities, in addition to judgment and memory. They can be easier to care for, and their quality of life can be better through the use of special clothing and products that are available on the internet. Try the Alzheimer's Store (www.alzstore.com) or Buck and Buck/Alzheimer's (www.buckandbuck.com/shop-by-need/alzheimers-clothing.html).

Now let's move to the State level where I will recommend the web site for Elder Options (http://agingresources.org), a clearing house for a great wealth of information and services provided by the state of Florida. Elder Options not only offers information on-line, but it conducts free workshops all over the State, including its popular Savvy Caregiver Training. Some people learn better one-on-one than searching through web sites, so these workshops bring the information to the caregiver, including those of us in Citrus County. A schedule of educational events can be found on the site.

This is also the agency in Florida that works to prevent elder abuse, neglect, and exploitation. Anyone who has concerns in this area, either in the home or under professional care, can call 800-962-2873.

If you are already in the search for an appropriate assisted living facility or home health care provider, you can find helpful guidance on the Florida Agency for Health Care Administration web site (www.ahca.myflorida.com). This is a licensing and regulatory agency, and from its web site you can draw conclusions about the quality of care at facilities or home care providers that you are considering. On AHCA's menu bar you will find "Find a Facility," and clicking it will take you to "Consumer Guides" and "Compare Healthcare Facilities." There are also portals where you can report complaints and fraud.

Now, let's move to the regional level where we have the Alzheimer's Family Organization (www.alzheimersfamily.org), a nonprofit that serves and supports caregivers in eight west-central Florida counties, including Citrus County. One of the best ways caregivers can get the knowledge they need is through caregiver support groups. The AFO offers more than 50 of these group meetings, including several in Citrus County, and they can be found listed on the web site.

The AFO also offers Caregiver Days where you can learn from experts. Their schedule is listed on the website and in the AFO's quarterly newsletter, which is included with your membership. However, you do not have to be a member to attend their Caregiver Days.

Another great local resource is Citrus County Senior Services. Go to the Citrus County Board of County Commissioners website (www.citrusbocc.com) and on the right side of the front page you will see a box that says "Quick Links." A click here will give you a drop-down menu that takes you to "Senior Care Services." Quick links will also take you to "Veteran Services," which can be useful for caregivers whose loved ones have served in the military.

Caregivers will face important legal considerations, such as health care surrogacy, obtaining a durable power of attorney, and determining whether to create a DNR (do not resuscitate) order. These decisions may involve working with an elder care attorney, and often we put them off far too long. Ideally, they should be addressed while your loved one is still cognitive. A good starting place that will cost you nothing is Hospice of Citrus County and the Nature Coast (https://hospiceofcitrus.org). This nonprofit organization offers a free workshop called "Five Wishes" that is a great starting place to get your loved one's affairs and your own affairs in order.

Let me add here that many people simply do not understand the role of hospice and the services available. The common belief is that hospice involves only end-of-life services, but many hospices offer much more, including home care. Contact them; they will tell you about these services and what it will take for your loved one to qualify.

On the local level, Citrus County Dementia Friendly America (www.dementiafriendlyamericacitruscounty.org), offers a Resources Page. Most of the information on this page has come from other websites, but there are links that can be useful. Citrus County DFA also offers a printed Resource Guide, but be aware that it contains only a sampling of services that are actually available in the county.

And let's not forget what a great resource we have right here in Citrus County with Find-M' Friends which, in cooperation with the Key Training Center, manufacture Out of Harm's Way scent kits that can save lives when people with dementia wander and become lost. You can call 352-613-3486, 352-422-3663, or the Sheriff's Office. They are free, but a donated is requested.

Speaking of the Citrus County Sheriff's Office, it offers a Special Needs Person Registration System, a resource not yet found in many other jurisdictions. Just go to their web site (www.sheriffcitrus.org) and click the button "How do I?" This will create a drop-down menu where you can click "Autism/Dementia" to register online.

Finally, you can find local resources at the Coping with Dementia website (www.coping.today). In the interest of full disclosure, I must advise you that this is the web site for my company. It has a listing for upcoming workshops, family support groups, and caregiver days.

I also want to point out that in the upper lefthand corner of the front page of this site you will find a button that says "See Who's Dementia Friendly." This will lead you to a great and special resource that most counties in America do not have. It is a listing of the more than 40 businesses that have undergone training to be certified to provide dementia-friendly service.

Want to shop or dine in a safe place that understands what you are going through as a caregiver, and that knows how to correctly interact with your loved one living with dementia? In Citrus County we have such businesses, and, in my opinion, they are the most responsible and forward-looking resources of all for caregivers seeking ways to reduce the stress of their task. These businesses can offer you respite and help you keep your loved one social while enjoying a more active quality of life.

Finally, I also distribute a monthly e-newsletter that contains up-to-date information of support groups, workshops, special events, and services in Citrus County. To receive this newsletter, just e-mail me at deb@coping.today, and I will place you on the list. This list is confidential and never sold or shared with anyone else, and you can unsubscribe any time you like.

Don't forget that even during the sometimes difficult task of finding help and resources, "we all deserve the best!"

Debbie Selsavage is a certified dementia practitioner and trainer in The Positive Approach to care, a licensed assisted-living administrator and president of Coping with Dementia LLC, an organization dedicated to making life better for those with dementia and their caregivers. Contact her at deb@coping.today.