The brochure does a pretty thorough walk through the steps that you need to take to prepare you and your loved one for a natural disaster. The major parts include:

• The Calm Before the Storm
• When to Start Planning? Long Before Disaster Strikes!
• Start with Conversations
• Then, Take Action
• A Disaster Is Imminent – What Should You Do?
• Can You Stay – or Should You Go?
• Getting Out of Harm’s Way
• Your Time Away
• The Return Home
• Planning Makes a Difference
• Checklists
• Resource

The checklist section alone is worth the trip. Check it out.

Much is said about caregivers and their need for respite time away. But what if you could make your time as a caregiver more rewarding, more fulfilling…something that you looked forward to.

No one is saying that caregiving will ever be easy, but being able to look beyond the difficulties and seeing the beauty in people despite what afflicts them is exactly what Phillip Toledano and Judith Fox have done.

Phillip Toledano’s Days with My Father is an amazing site that received a lot of recognition earlier this year and will be a book by the same name that will be out June of 2010. It’s hard to look at the site and not be moved. Toledano is clearly a talented photographer and has two other gorgeous photo books in print: Phonesex and Bankrupt which remarkably wasn’t done recently, but in 2004.

I heard Judith Fox interviewed on Fresh Air the other day and was taken by her energy and compassion. Judith married her husband just three years before he was diagnosed with Alzheimer’s. As Fresh Air puts it, “In an attempt to remove the sense of isolation that so many feel, Fox attempted to capture images of the soul of the man she still loves.” Ultimately she was encouraged to publish a book with her photographs. There’s a five-minute video that talks about the thinking that went into the photos and the book called, I Still Do: Loving and Living With Alzheimer’s.

Caregiver

First, as a caregiver, you must be cognizant of your own physical and mental health, and realize that for you to effectively perform your role in reducing anxiety in someone who have dementia, your emotional house must be in order. That means getting rest, nutrition, exercise and time away will keep you prepared to attend to another’s needs.

As for those suffering from dementia, don’t get caught up in whether something, makes sense or not. A person with dementia may not be able to piece everything together, but their emotions are still valid. Their anxiety can be heightened when they aren’t being understood. Accept that their emotions have more validity than the logic that leads to them.

At Home

For those who are caring for someone with dementia at home, consider some of these tips:

• Use memory aids – They reduce stress and can help someone with dementia remain independent longer.
• Provide structure – A stable home environment with clear routines can help.
• Establish a nighttime ritual – Symptoms can often be worse in the evening. Try to provide a ritual in a serene environment that is away from noises and distractions.
• Enhance communication – Use simple sentences and speak slowly.
• Create a safe environment – Minimize clutter and keep the furniture consistently in the same place.
• Encourage exercise – Among other things, it can help with mood and attitude.

Visiting

If the dementia sufferer is receiving continuous care, consider these tips from Toronto Long-Term Care Homes and Services:

• Visit when you want to visit, not when you think you should visit.
• Find out the best time to visit with your loved one. Generally, people with dementia tend to be more alert during the late mornings and early afternoons.
• Watch for fatigue.
• Enjoy the silence.
• Live “in the moment.”
• Try “tidying the house.” Meaningful and familiar activities, such as folding clothes, make people feel useful.
• Be flexible. If your family member begins to wander, walk with them.
• Use distraction. If your family member gets upset, bring attention to something else.
• Give one instruction at a time and use physical cues.
• Most of all have fun!

There are more tips in, “When you come to visit…Tips on making your visits more meaningful” (PDF)

Interacting

For many caregiving tasks, Clinical Tools recommends using the following approach will help your loved ones better understand what is going on and reduce anxiety, especially in middle to late stages of dementia.

• Approach from the front: This will help loved ones with dementia be aware that you are coming. Approaching from the back can produce anxiety.
• Walk slowly: Allow time for loved ones with dementia to take in that you are approaching.
• Stand to their sides: This is a supportive stance, whereas standing right in front of them may feel confrontational.
• Call them by name: Use their names just to get their attention. As dementia progresses they may respond best to their first names, because they often remember them the best.
• Crouch low: Crouching down if they are seated or lying down helps them feel less threatened.
• Offer your hand: Their responses to this gesture will give you an idea of whether they would welcome further touch such as hugs.

They have a video on their site that demonstrates this approach.

There’s evidence that music and aromatherapy may reduce anxiety and improve mood.

Finally, don’t do it without help. All people change, especially those with dementia. Consulting experts regularly will help you understand your situation and better prepare you to help someone with dementia.

The article provides readers with 10 signs of altzheimer’s:

1. Memory Loss
2. Difficulty performing familiar tasks
3. Problems with language
4. Disorientation to time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things
8. Changes in mood or behavior
9. Changes in personality
10. Loss of initiative

Although many of us do experience some memory changes with age, people with Alzheimer’s disease suffer memory loss beyond slight forgetfulness.

This same Alzheimer’s Association article provides a nice chart illustrating the differences between the symptoms of Altzheimer’s and the symptoms of someone with normal age-related memory problems.  For example:

• Someone with Altzheimer’s will forget an entire experience.  Whereas, someone with age related memory loss will forget parts of the experience.
• Someone with Altzheimer’s will gradually be unable to use notes as reminders.  Whereas, someone with normal age-related memory changes is usually able to use notes as reminders.

Access the article for additional examples.

Coach Broyles’ Playbook for Alzheimer’s Caregivers

Coach Frank Broyles, Athletic Director for the University of Arkansas, wanted to share what he had learned about Alzheimer’s caregiving because it had been difficult to find good information when he needed it. It’s the same sentiment that gave momentum to Senior Help Forum.

The Playbook is available for free as a PDF file from www.alzheimersplaybook.com, or you can call 800.272.3900 to request a copy. The book is 112 pages and extremely well laid out. It’s broken into four major, color-coded sections:

• Early Stage AD – may last 2-4 years
• Middle Stage AD – may last 2-10 years
• Late Stage AD – may last 1-3 years
• Resources Guide

Each of the first three sections are further broken into the following parts:

• Pre-Game Planning – Largely focused on knowing what you’re up against in this stage
• Coaches and Special Teams – Mostly addressing doctors and ‘special teams’ that might include anything from support groups to Hospice
• Playing Offense – Making sure that you have a plan in place, both daily and long-term, and being prepared to adjust the plans
• Playing Defense – Preparing for the likely behaviors that come with Alzheimer’s
• The Training Table – Special attention to nutrition for both the patient and the caregiver

What can we say? It’s the most thoughtfully presented guide to Alzheimer’s on the net.

Bonus: The Alzheimer’s Playbook site has a download page with the Playbook in numerous languages, a pocket tip sheet and Playbook audio book.

Mayo Clinic on Alzheimer’s

While the Mayo Clinic site has a few small quirks, it’s a nice site within the overall MC site. Quirks? It was a little off-putting that it started with the definition of Alzheimer’s. It gave the appearance that there wasn’t any depth to the site, which there is. There’s also a link to their “new blog” which links to the first post in 2006. Have no fear, they’ve posted as recently as March 19.

The site has a number of major areas for Alzheimer’s on tabs at the top of the page. The tabs include:

• Basics – Includes a number of subtopics like Definition, Symptoms, Causes, Risk factors, Complications, Preparing for your appointment
• In Depth – Is a deeper look at some of the topics in the Basics area
• Multimedia – Includes images, slide shows and podcasts
• Expert Answers – Coverage of AD related topics like, “Antipsychotic drugs: Can they help people with Alzheimer’s?”
• Expert Blog – With posts once, or twice, a month including topics like, “Should you tell someone about his or her Alzheimer’s diagnosis?”
• Resources – Links to a number of key Alzheimer’s sites
• What’s new – A page that points you to new content on the site

Alzheimer’s Association Publication Page

Finally, a single page from the Alzheimer’s Association site that is of particular merit is the publications page. Acrobat PDF files are often a place to find well crafted and focused reports on a particular topic. The Alzheimer’s association has pulled together a good number of documents and categorized them under the following groups:

• Basics
• Caregiving
• If You Have Dementia
• Quality Care
• Safety
• Financial/Legal
• Reports
• Alzheimer’s Association

There are 90+ files in this area, so we’ll only highlight a few.

• Alzheimer’s Disease: The Basics – A great 32-page introduction to Alzheimer’s.
• Respite Care Guide – A nice overview of getting a break if you’re a caregiver.
• Staying Safe – A brochure on safety at home, while traveling or in an emergency.
• Money Matters – A brochure on identifying the cost of care and how to pay for them.

Former Supreme Court Justice Sandra Day O’Connor, former Speaker of the House Newt Gingrich and former Surgeon General David Satcher are on a task force studying the disease, which may overwhelm the U.S. health care system as baby boomers age, and talk about it on NPR’s Talk of the Nation.

You can try to download the MP3 here, but there’s no telling how long it will be available.

Speaking of Faith, an excellent American Public Media program, in their characteristically thorough fashion covers Alzheimer’s in their minisite called, Alzheimer’s, Memory, and Being.

Alzheimer’s disease has been described as “the great unlearning,” a “disease of memory,” a “demise of consciousness.” But what does it reveal about the nature of human identity? What remains when memory unravels? And how might such insights help Alzheimer’s sufferers themselves?

One of the most poignant moments was when psychologist Dr. Alan Dienstag talks about a woman who, upon visiting her husband who had Alzheimer’s, would always ask if he remembered her and was distressed when he didn’t. Dr. Dienstag suggested that she look for other signs of recognition. Yet, she persisted in asking. One day her husband responded in a most direct way by saying that he didn’t, but that he knew he loved her.

ABC’s Nightline talks about the statistics (1 in 7 will get Alzheimer’s by 65, and 1 in 2 by 85) and encourages people to get tested. The lead reporter, Terry Moran and Alzheimer’s activist, Meryl Comer, get’s their DNA test results on the show.

Dr. Steven Dekosky notes, “As we speak, there are some drugs, the drugs developed several years ago that are symptomatic drugs for the disorder, and probably 100 medications in various stages of development that are targeted specifically at the disease itself.”

You can watch the video here, or read the transcript here.

Related Links:

• Alzheimer’s Disease Facts and Figures – A new report (PDF)
• Caregivers Struggle with Needs of Alzheimer’s Patients – with Meryl Comer – PBS audio & video

So we were happy when we stumbled across the Alzheimer’s In My Community page. This one is particularly important because of the daily challenges that Alzheimer’s presents to those affected by it. Thus, a big part of local Alzheimer’s programs are structured around caregiver support and respite care because of the challenges it represents to loved ones, especially spouses who are often older and in need of care themselves.

Other features of the regional sites that we saw include: support groups, education programs, training, professional training, special events, Memory Walk and advocate.

To find a regional, or local, support check out the Alzheimer’s In My Community page.

And don’t forget to check out our State & Local Resources page for more local resources.