Remember, each state will have a different structure and ruling on how much support goes to caring for Alzheimer's patients.  Find out in your state!   
-------------------------------------------------------------------------------------------------------------------------------------------------------------------------California Policy Update
January 2011

Governor's Budget Proposal
Governor Brown laid out his proposal for the FY 2011-12 budget.  With California facing a budget shortfall of approximately $25.4 billion, the Governor's budget proposal includes $12.5 billion in spending reductions, $12 billion in revenues (to be achieved by maintaining current tax rates for another 5 years - subject to voter approval in June), and approximately $1.9 billion in borrowing and tax shifts.  These proposals would close the $25.4 billion budget shortfall and create an additional $1 billion for a rainy day fund.

Good news:  The Governor is maintaining funding for the California Alzheimer's Disease Program and the Caregiver Resource Centers.  

As in the past, the Governor's budget does not identify cost increases in other areas of the state budget due to the following eliminations and reductions - these increases would primarily occur in nursing home and hospital expenditures in Medi-Cal, which are much more costly than home and community-based services.

The Governor proposes the complete elimination of:

• Adult Day Health Care, which would leave 27,000 beneficiaries without the vital services the program provides.
• Multipurpose Senior Services Program (MSSP), which provides case management services to elderly clients who qualify for placement in a nursing facility but wish to remain in the community.

In addition, the budget proposals include the following significant reductions:

$486.1 million in cuts to the In-Home Supportive Services (IHSS) program, which include:

• An 8.4% reduction in service hours:  This would implement an across-the-board reduction for all IHSS recipients, and would be in addition to the 3.6% reduction enacted in 2010-11.  The 8.4% reduction equates to a loss of 5 minutes of services per hour.
• Elimination of domestic and related services for recipients living with their provider:  Under this proposal, approximately 300,000 IHSS recipients living with their provider would no longer be eligible for domestic services (including housework, shopping for food, cooking, and laundry).  
• Requirement of physician certification for IHSS services:  Under current law, IHSS recipients must be assessed every 12-18 months by a county social worker to determine the types of services needed and the number of hours required.  This proposal would add to this process a medical evaluation, signed by a physician, that confirms IHSS services are being provided to those most at-risk of institutionalization.
• Elimination of state funding for county IHSS advisory committees:  Would eliminate the mandate for counties to establish advisory committees, which have been funded by the state.

Reductions to the Medi-Cal program, similar to those proposed last year:

• Placing monetary limits on durable medical equipment and supplies.
• Limiting prescriptions (except life-saving drugs) to 6 per month and doctor visits to 10 per year.
• Implementation of mandatory co-payments for Medi-Cal beneficiaries, including $5 co-payments for physician, clinic, dental and pharmacy services, $50 co-payments on emergency room services, and a $100/day and $200 maximum co-payment for hospital stays.

The Governor is also proposing significantrealignment of state services - most to the counties but some back to the state.  In 2012 he is proposing the following:

• Shifting of all responsibility for Adult Protective Services (APS) to the counties in which the counties would be given total flexibility and discretion in administering the program.
• In preparing for implementation of health care reform, he proposes shifting certainMedi-Cal services now administered by the counties back to the state in order to ensure better coordination of all Medi-Cal services - this would bring IHSS back to the state.
  

My mom frequently thinks that her mother and her brother are visiting her.  The truth is, they have both been deceased for many years.  At first this spooked my dad quite a bit, but realizing that people with dementia may forget the event of death of loved ones helped us to deal with mom’s condition with empathy and courage.   

While I am unable to find answers for why this is, Alzheimer’s patients seem to have a stronger memory of the  deceased people than the memory of their death.  I tend to look at it as the emotional memory must be held somewhere other than the area where the factual memory is stored. 

If you remind your loved one that the person they are looking for is actually dead, you may upset your loved one terribly.   We know, because my family has been through this issue many times and has made plenty of mistakes along the way to know what works and what doesn’t.  Instead, here is a communication example to help you. 

Example:

Loved One:  “Where did my mom go (a deceased person)?  She was here talking to me just a minute ago.”

DO NOT: 

• Remind your loved one that the person they are looking for is dead.
  
• Fabricate a story.  Somehow they know they are being lied to.
  
• Panic or think that a bad spirit is nearby. 

 DO:

• Recognize that the person he/she is looking for may be someone important or was once close to them.  
  
• Prepare yourself to enter the world of Alzheimer’s.
  
• Try to trigger their emotional memory, as opposed to facts.  
  
• Ask your loved one:  “Tell me about Grandma (or whoever).”  “What was some of the happiest things you did together?”  “Tell me about Grandma's favorite dish she used to make?”  
  

You might just get to hear some simply fantastic stories.  Stories you never knew existed.  Stories that will make you wonder…”so what part of that was fiction versus non-fiction?”

• Thank your loved one for sharing.

Increased agitation, irritability and disorientation in the late afternoon or evening – “Sundowning”

 “Sundowning” refers to your loved one exhibiting increased   agitation, irritability, disorientation and other difficult behaviors at a certain set time of the day.  Usually it shows up as a pattern between late afternoon to early evening. 

Although there is no definite proof, many medical professionals theorize that this “sundowning” effect may be caused due to afternoon fatigue, caregiver fatigue, lessened stimulation later in the day, and lowered light levels later in the day.  Furthermore, it could also be due to prolonged period of boredom for your loved one, followed by over stimulated environment later in the day that may confuse the already confused loved one even more. 

Dealing with this issue is perhaps best handled through evaluating your loved one’s daily activity pattern as well as their living environment and making some alterations to one or both.  The idea is to find and create a balanced structure of just enough exercise and activities in an environment that provides maximum comfort for your loved one.  

Here are some ideas.

Light Therapy.     

Have your loved one get plenty of early morning sun exposure.  According to my mom’s neurologist, 30minutes to an hour of early sunlight exposure has been known to help improve Alzheimer’s patient’s mood throughout the day.   It is also a good source of vitamin D. 

Other environmental adjustments you should consider making are as follows:

• Make sure the house is well lit, especially as the sun goes down.
  
• Encourage your loved one to take an afternoon nap.
• In late afternoons, find stimulating but easy things for your loved one to get engaged in, such as helping with light cooking duties or folding laundry. 
• Reduce overactive environmental stimulation – such as kids running around the house, a loud TV, too many people over at the house, etc…
• If other environmental changes don’t help change the pattern, you should consult with the doctor about changing the schedule for giving medications. 

In my mom’s case, sundowning effect was becoming increasing problematic, so her doctor suggested taking Namenda in the afternoon.  This, along with adding more light in the house seems to be helping with her symptoms.         

You discover that your loved one hides things. It can be anything from a freshly baked pie that was on the kitchen table, car keys, or even an heirloom silver platter.

Symptom: 
Reasons can be various. Some people have always been hoarders, while others seem to need to “hold on” to things or to “keep things safe”. It can be anything from an insignificant item such as a frying pan in the kitchen to daily essentials such as shoes.  

The level of preventative measures you need to take really depends on the importance of the item(s) and whether it relates to your loved one’s safety and well being.

 Every couple of days, my dad turns the entire house upside down looking for my mom's makeup. At first it was very frustrating for my dad, but these days he treats it as a day to go treasure hunting. Eventually he recovers mom’s makeup from the deep corners of her closet, or finds them hidden under the mattress or tucked away beneath the crevices under the sink.  We can only surmise that she hides her makeup because she values them.      

The degree of prevention depends on the significance of the item(s), as well as the importance of your loved one’s safety and well being.  If your loved one has diabetes and he or she was hoarding away candy for secret consumption, you will have to find ways to prevent that from happening.  In my mom's case, missing make up may be annoying but not harmful. 

As a preventative measure, you may want to consider designating a room with a lock where you store all valuables so your loved one can’t get in.  You may have to keep the car keys in a safe place where only you can get to. You may also want to create for yourself a reminder and pattern to check the trash before throwing it out. Your car key or your loved one's eye glasses may just be in there.

Example:

You just discovered that the pie that was freshly baked an hour ago sitting on the kitchen counter has suddenly disappeared.  When you ask your loved one whether she has seen it, you get the familiar “ I don’t know” response.

You: “Jane, the pie that was on the table is gone. Do you have any idea where it could be?”


Loved One: ”I don’t know. May be you ate it all up.”

Don’t:
 Remind her she was the only other person in the house and that you didn’t touch it.
 Ask her to recall what she has done with the pie.

Do :
Engage her in a “treasure hunt”. Ask her to go hunting with you.
Expect this behavior to continue.
De-clutter the environment and keep it de-cluttered.
Look for a pattern for items that are being hidden, as well as the location. It will reduce your frustration over time,   and reduce the time it takes to recover the item(s).
Remember that accusing your loved one may result in a drastic outcome, and should be avoided at any cost.
Give yourself time out from your loved one when your frustration level is high. Walk away and count to 200 if necessary. You need a break, even if it’s temporary.
Try to think of the humor in the situation.

One caregiver told me a story that she looked all over her house for a week in search of her
bathing suit. She even combed through that week’s trash to no avail. She suspects that her 87 year old
mother-in-law hid the bathing suit, and holds a fashion show in her room by herself sporting the outfit.
While she was telling me this story, we both laughed out loud visualizing in our minds what that would look like.   How funny is that?

Symptom:
     Your loved one asks you the same question over and over again.  
Cause:
     They forget what they've heard even a minute ago, but they know something in their environment is changing. 
Example:  
Loved One:  “Where are we going?”  
You:  “For the 11th time Mom, we’re going to Maddie’s Spring Concert at Lake Arrowhead, remember?”
Instead:
Loved One” “Where are we going?”
Don’t:
     Remind her she’s asked the same question for the 12th time. 
     Ask/expect her to remember your reply.    
Do :  
     Stop counting.
     Remember “Don’t Sweat the Small Stuff”
     Be thankful that your mom still has the ability to ask you questions.  
     Ask a related question about the person or the event and try to make an emotional connection.               

Reply:
   “Maddie’s Spring Concert is today.  What do you remember about Maddie?”   or "Maddie will perform for you today.  What do you remember about ________ (name of music or place she particularly liked in the past)?"  

You may be surprised at how much information your mom will be able to tell you about Maddie, especially if Maddie is someone close to your mom.  Hopefully this dialog will allow you to ask her another question and pretty soon you'd have reached your destination.