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Support References and Advice


Dementia Memory Quilt Deadline

This is a reminder that the deadline for the Dementia Memory Quilt is Jan 7, 2006. For those that missed the details on the first post: 8x8 square of fabric, allow 1/4" seam allowance on all 4 sides. Square will be 7 1/2" when sewn into quilt. May use cross stitch, painting, photos, hobbies, etc, whatever to bring out your loved ones memory. Be sure to include person's name, birth and death date. Pieces will be assembled into a quilt and quilted. The quilt will then be presented at the Dementia Care Conference in 2006. When square is completed please mail to:
Tracy Mobley,  22 Coyote Trail  Elkland, Missouri  65644.

[Choosing A Home Health Care Provider]    [Selecting A Nursing Home ]
[ID Bracelets - A Must For The Dementia Patient]    [Legal Concerns]
[Taking Care Of The Caregiver]    [12 Steps For Caregivers]
[Links For More Detailed Information]

Choosing A Home Health Care Provider
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It is imperative that we ask certain questions when we are looking for home health care providers to take care of our loved ones. Full service agencies assume responsibility for many of the concerns raised below. Referral services place more of the responsibility on the caregiving family as the direct employer of the in-home aide. Below is a list of questions to get you thinking about some of the things to look for when hiring home health aides from an agency:

How long has the in-home health agency been in business?

How is the agency licensed or certified?

Are the employees bonded and insured?

What kind of criminal background checks are performed for prospective employees? Are references checked? How many? Are personnel files updated annually?

What kind of experience/certification do their aides have to have before they are hired?

What type of training does the company provide to employees? Does training cover dementia?

Does agency provide employee job descriptions in writing for clients?

Does the aide have reliable transportation?

Does the agency offer a free home health care consultation by a registered nurse prior to start of service?

What kind of quality control checks are made by supervisory personnel and how frequently are they made? Who is available if problems arise? Is 24 hour call-in to a registered nurse available?

Is a list of agency references available for you to check the level of client satisfaction? (Be sure to check these out!)

Can you interview the employee? Is there a fee for this?

If you need specialized medical care, are employees licensed to perform it?

What is the billing procedure? Does the agency provide a billing and payment schedule and refund policy which also includes what is covered by insurance or Medicare/Medicaid or paid out-of-pocket?
Adapted from the Missouri Council of Senior Citizens Senior Action Alert, June, 1990.

Selecting A Nursing Home
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Deciding upon nursing home placement is never easy. Families of individuals with a diagnosis of Alzheimer's disease and/or a related dementia have a particularly difficult task because often the diagnosed individual can not participate in the decision. This leaves it up to the family to decide when and where to move their loved one.

Moving a family member brings many decisions and, ultimately, they are personal decisions. Professionals and friends can help with information and discussing options, but the family knows the diagnosed individual and their circumstances in a way that others can not. Sometimes circumstances leave the family little choice (a sudden hospitalization and few openings at local homes), but for families coping with Alzheimer's disease or a related dementia on a day to day basis there is often time to plan for long-term care, and it is in the patient's and family's best interest to plan ahead

Considerations for planning for long-term care include, but are not limited to, the cost of care, type (or level) of care needed, the location of the home and the family's comfort level with the facility. A checklist of specific considerations is included in this nursing home packet to assist with decision making once the choices have been narrowed.


The cost of nursing homes vary, dependent on the home and the type of care being provided. The average cost nationally is $42,000 per year, and in Northern Virginia it is often higher. This cost is paid privately by the diagnosed individual, state Medicaid programs and to a much smaller extent by Medicare and other insurance plans.

Medicare: Medicare covers short-term skilled care up to 100 days. Only the first 20 days are covered at 100% and from day 21 to day 100 the patient's copayment is $95 per day (1997). To meet the criteria for Medicare the patient must have a three day hospitalization and be in need of skilled care. Admission must be within 30 days of hospitalization and the patient must be in need of services for which he/she was treated in the hospital.

Medicaid: Medicaid is a state/federal program that does pay the cost of nursing home care for eligible individuals. The patient must meet income and resource requirements, although for spousal couples there are provisions under the law to provide some protection for the well spouse. The Medicaid programs are administered on a local level and applications are made through the county social services departments. The Alzheimer's Association, Northern Virginia Chapter has a list of these departments.

Often patients will enter nursing homes as a private pay patient, but once their resources are "spent down" they may apply for Medicaid. Homes often ask detailed financial questions on the admissions application to ascertain how long the patient can pay privately before needing to apply for Medicaid.

Other Insurance: Long-term care insurance and a very few health insurance policies will pay for nursing home care. Families need to check carefully any plans they have as to the requirements to make use of the benefits offered.

Type of Care

Nursing homes usually distinguish between skilled care and custodial (or intermediate) care. Skilled care is covered, short-term by Medicare and sometimes by other insurance. Examples of care which could be considered skilled care are, physical therapy after a joint replacement or a stroke, nursing services such as IV therapy, dressing changes for a stage 3 wound or new tube feedings. Custodial care, which is not usually covered by insurance, other than Medicaid, encompasses much of the care provided in nursing homes. It usually includes assistance with most activities of daily living such as assistance with eating, dressing, bathing, medication management, and walking.

Most patients with Alzheimer's disease or a related dementia require custodial care. Some homes have designated Alzheimer's or dementia units to meet the special needs of those with cognitive impairment. Currently most homes self-define their dementia unit and what is included can vary considerably from home to home. Many have precautions for those who may wander, special training for staff in dealing with difficult behaviors, activities geared for those with memory loss and other environmental considerations. Families will want to ask the home what makes their dementia unit specialized. Additionally, not all patients with dementia necessarily require a specialized unit. Caregivers know the patient best and their particular needs. It is essential to visit all homes under consideration in order to make an informed choice. Families may want to visit more than once, at different times, to observe the routine of the home.

Location and other considerations

A location convenient to the family is an important consideration. Sometimes due to availability or for financial reasons it is not possible to find a home which is close to the family. If a home is convenient it does allow frequent visits which can be of comfort to the family and allows them more opportunity to monitor the care being provided. Forming relationships with the staff and working together will benefit everyone.

Families who have a physician with whom they would like to continue, should check with him/her to see if they provide care in any nursing homes and which ones. If your MD does not practice in nursing homes, the homes have a list of physicians who regularly visit there. The family may want to go over this list with their current MD for recommendations.

Finally, families will want to consider their comfort (gut feeling) and the patient's comfort with the home and staff.

ID BRACELETS - A Must For The Dementia or Alzheimer's Patient
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Most people think of Alzheimerís disease and dementia as memory loss, but few realize that wandering is a common and potentially life-threatening behavior of persons with the disease. As many as 70 percent of the 4 million Americans with dementia will wander at some point, often leaving home and unable to find their way back.

Safe Return provides registrants and their families with a personalized bracelet and other identification materials, and stores contact information in a national computerized database. The programís nationwide, toll-free 800 number, listed on the bracelet, is linked to a network of 17,000 law enforcement agencies nationwide. Each registrant will be assigned their own individual I.D. number by which they can be identified. Caregivers may also choose to wear an I.D. bracelet. This can alert others to look after the person with Alzheimerís if the caregiver becomes incapacitated.

Legal Concerns
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Seniors' legal needs are often different from those of others. The field of elder law includes estate planning, Medicaid and Medicare claims and planning, Social Security and disability planning. Most elder law attorneys offer all or part of these services.

While phone interviewing prospective attorneys, ask about fees, background, and experience in matters such as yours. If you're comfortable, make an appointment and take all pertinent information and documents relative to your situation to the meeting. A prepared list of questions concerning time and cost is advisable.

Unsure what to ask? The National Academy of Elder Law Attorneys provides a free brochure titled "Questions & Answers when Looking for an Elder Law Attorney." For copies send your request to NAELA, 655 North Alvernon Way, Suite 1108, Tucson, AZ 85711 or call (520)881-4005.

Important Information About Legal and Financial Documents

Here is a list of items clients should compile for their first meeting with an elder law attorney. It may seem like a daunting list, but we feel Alzheimer families are better off knowing up front what they need to have in order to make the necessary legal and financial decisions to protect for the future.

Planning Documents:

Power of Attorney (if you already have one)
Living Will
Appointment of Health Care Agent
Designation of Conservator
Last Will and Testament
Probate Court Documents:
If a Conservator has been appointed by a Probate Court:

Fiduciary's Certificate
Probate Court Decree Appointing Conservator
Accounting Any other Probate Court filings or decrees
If the residence is a home:

Deed to the house
Real estate tax bill
Homeowner's insurance premium bill
Mortgage papers and payment coupon
If the residence is a condominium:

Deed to the condominium
Real estate tax bill
Homeowner's insurance premium bill
Mortgage papers and payment coupons
Condominium common charge bill
If the residence is a rental:
Current rent
Other Assets: A list of all other assets owned, whether solely held or jointly held with another. If there is a spouse, a list of all assets owned by the spouse, whether solely held or jointly held with another. Be sure to specify the names that appear on each asset and the current balance or value for each.

Assets include:

Checking accounts
Savings accounts
Money market accounts
US Savings Bonds
Real estate other than the residence (supply a copy of the deed)
Investment accounts
Business interests
Life insurance policies (face value; cash surrender value, annual dividends, if any)
Loans or mortgages
Motor vehicles
Trailers, recreational vehicles
Fixed Income:

Social Security benefit amount (current)
Gross pension benefit
If there is a spouse, supply this information for the spouse also.
Liabilities and Expenses:

Outstanding loans, monthly payments
Outstanding medical bills
health insurance premium bill
Gifts: List of all gifts (including charitable contributions) made during the prior three years; list only those gifts where the total of all gifts in a given month exceed $500.00. (There is no need, for example, to list a $25 birthday gift in one month and a $75 gift in another money if those were the only gifts in those months.) Provide an exact amount and date for each gift.

This list was compiled by Attorney Lea Nordlicht Shedd, Shedd and Hoberman, LLC, Hamden, Connecticut.

Taking Care Of The Caregiver
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"If you don't take care of yourself, who's going to do it for you?" And, "If your health breaks down, who's going to take care of your patient?"

These questions raise some of the most difficult issues caregivers must face. When a loved one is sick for a few weeks, most of us can make some short-term adjustments to provide the needed care. But, when the caring is of a long-term nature, we can't go on for very long without some organization or structure to our days. One of the most difficult things for caregivers to do is to retain some perspective on what's best for their loved ones--and for themselves, as caregivers.

Experts warn that in some cases of Alzheimer's, caregivers can experience such great stress and trauma as may put them at risk of becoming potential secondary victims of the disease. Often, emotionally-laden promises and tacit agreements of earlier relationships weigh heavily when decisions are made about providing care for the person with Alzheimer's disease.

In the early states of the disease, caregivers attempt to provide complete and perfect care for their loved one. However, as the months and years pass and the disease progresses, greater demands are put on the caregiver. The less than perfect care provided by an exhausted caregiver leads to feelings of guilt and failure. It's little wonder that caregivers show the strain.

The suggestions that follow may enable caregivers to protect their own health and welfare.

Don't try to do it all yourself. You must set limits to survive and stay healthy. Remember, you need to stay healthy to help your loved one. Accept help when it is offered. It may be difficult at first and you may be nervous about leaving your patient in someone else's care, but you will get used to your time away and will quickly realize that your patient will be none the worse. You will have replenished your energy and patience and will be better able to cope.

Develop a sense of your resources. Make your job lighter, more manageable; be sure to contact your local Alzheimer's Chapter for information and help. Also consult your community service agencies, churches, hospital social workers, area agencies on aging, etc.

Actively pursue your resources. Make them work for you. And don't be afraid to ask friends and relatives to help; they may be waiting for just that. You may be surprised to learn that you have been holding them off. Explain Alzheimer's and how it has affected your loved one. That may be all you need to make others comfortable in helping out on a regular basis. Sometimes just asking a friend to come over for a short visit can make a big difference.

Set priorities. Do the important things first. Don`t expect to accomplish all the things you were able to do before your caregiving days. If you kept a house immaculately clean, try to accept some dust. If you cooked fancy meals, try less time-consuming dishes or even convenience foods. Don't create obstacles by expecting too much of yourself. Do forgive yourself if things don't go just right; be grateful that your loved one will quickly forget any oversight or mishap.

Develop a sense of humor. It will help carry you through. Some things that happen are actually incongruous and funny; learn to laugh with your loved one and your family.

Maintain social contacts. It is essential for your emotional well-being that you keep up with at least some of your own activities. Get out, see friends, continue with your special interests. Get a neighbor, relative, friend, a volunteer from your local church or synagogue, or a paid home aide to provide the care for your patient.

Care for the caregiver. Remember that a caregiver is entitled to pleasurable times, too. Give yourself little treats such as a new purse, a good book, a special dinner with friends, a long bath, or whatever may please you. Realize that your patient will not get better, no matter what you do or how well you do it. Know that it is okay to be upset with your situation, as it is nothing you would have chosen. Many people find it hard; you are not alone.

Join a support group. Explore the availability of a group in your area. If no group exists, contact your nearest Alzheimer's Chapter for help in finding one in a neighboring community or for assistance in forming a new group. The sharing and caring at these meetings is invaluable. There is no one who understands the plight of a caregiver better than another caregiver.
The bottom line on when the caring is too much is when it threatens to break down the health of the caregiver, or severely limits the caregiver's normal social functioning and ability to work. When this is the case, it may well be time to sit down and talk it over with your doctor. Your Alzheimer's Chapter can be a valuable source of information and support. There are also a number of books that can be helpful to caregivers. Notable among these are:

The Loss of Self, by Donna Cohen, Ph.D., and Carl Eisdorfer, M.D.
Dementia, by Leonard Heston, M.D., and June White A.S.
The 36 Hour Day, by Nancy L. Mace & Peter Rabins, M.D.
Care of Alzheimer Patients: A Manual for Nursing Home Staff, by Lisa P. Gwyther, ACSW.
* * * * * *
This information is based on materials prepared by Rachel G. Billington and Ruth Rabyne, ADRDA members.

12 Steps For Caregivers
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The Twelve Steps were originally developed as the heart of the Alcoholics Anonymous Program in order to provide persons with a unity of purpose and guidance for individual growth . . .

In our research with caregivers of persons with dementia, one caregiver wife reported that she was applying the Alcoholics Anonymous Twelve Steps in her caregiving experiences.

(The authors use the Twelve Steps for Caregivers in their eight week intervention program and have recorded caregiver responses to them. The following are the Twelve Steps as developed by Farran and Keane-Hagerty and their discussions of each step.)

Step 1: I can control how the disease affects me and my relative.

Once the diagnosis of an irreversible dementia has been made, caregivers soon learn that modern medicine knows very little about the cause, treatment and prevention of the disease. It is important that caregivers understand that Alzheimer's is a chronic and ultimately terminal disease. And while caregivers may learn about caring for persons with dementia from numerous books and articles, it is important that they realize which aspects of caregiving they can control and acknowledge aspects over which they have no control. Ultimately, no matter what the caregiver does, the disease process will not change. However, caregivers can learn to control such things as disruptive behaviors and their attitude toward these behaviors. Some caregivers have reported that the Alcoholics Anonymous' Serenity Prayer has been helpful to them. It is as follows: "God Grant me the serenity to accept the things I cannot change, courage to change things I can and wisdom to know the difference."

Step 2: I need to take care of myself.

For most caregivers, this is a difficult lesson to learn. Some caregivers feel that they must "always" put other persons first and that it is selfish to think of doing things for themselves. They must learn that in order to continue providing care for their family members, they must first take care of themselves. Therefore, caregivers need to give themselves permission to "indulge" in such things as obtaining relief by using sources of respite and by involvement in outside activities that they both need and enjoy. Oftentimes professionals or other persons play an important role by giving caregivers permission to take care of themselves.

For some caregivers, self-care becomes a real issue when they can no longer assume full-time care and need to consider in-home assistance or nursing home placement. These decisions may be very difficult as caregivers may feel that they are failures, are selfish, and are not keeping a promise made to the care-receiver. Some caregivers need assistance to realize that the demands of providing care for a person with dementia may exceed individual resources. They need to see themselves as important and to acknowledge their abilities and preferences when making caregiving decisions.

Step 3: I need to simplify my lifestyle.

It is essential that caregivers be able to identify what is most important, what should be taken care of immediately and what should receive most of the attention. As caregiving responsibilities take up more and more of their daily lives other activities need to be adapted or dropped. If caregivers wish to maintain outside activities and interests, they will need to lower unrealistic expectations they may have of themselves.

Step 4: I need to allow others to help me.

This step can also be very difficult for caregivers who have lived most of their lives thinking they "should" be independent, and for those who view asking for help as a sign of weakness. Along with cultivating the gift of allowing others to help, they need to learn how to actively ask others for help. Caregivers often report that friends say, "Call me if you need help." We encourage caregivers to keep a list of activities nearby, and when this type of offer is made, the caregiver can readily say, "I need help with such and such . . ." Presenting others with a variety of specific tasks allows others to volunteer assistance and accommodate their resources.

Step 5: I need to take one day at a time.

This slogan is borrowed directly from Alcoholics Anonymous and is commonly used by family caregivers. It reinforces the importance of thinking only about the day's challenges and helps caregivers to focus their energies on what is most important in the short-term. It also lessens feelings of being overwhelmed when looking ahead to concerns which may never develop. It has been suggested that having dementia is the ultimate existential experience. Persons with dementia have a patchy memory of yesterdays and a poorly anticipated future. For the person with dementia, it is essentially the "here and now" that is significant--a reality to which caregivers must adapt.

Step 6: I need to structure my day.

Because of the memory impairment brought about by the disease, it is important that the caregiver develop a sense of structure, routine and rituals for their family member. In so doing, the care-receiver feels more of a sense of safety and security and caregivers can use their time and energy more efficiently.

Step 7: I need to have a sense of humor.

Caregivers have often reported that a sense of humor helps them through a difficult situation. One caregiver reported, "I choose to make this a humorous heartache." Another caregiver said, "You have to laugh, you can't cry all the time." Maintaining a sense of humor means that caregivers have to be objective enough to see the irony in painful situations.

Step 8: I need to remember that my relative's behavior and emotions are distorted by his or her illness.

In our research we found that while caregivers generally understand dementia as a disease process, they are more likely to take it personally and feel that the person is being "difficult" or is "getting back" at them when disruptive behaviors occur. It is important to help caregivers keep an objective viewpoint about their experiences and to be able to attribute to the disease what rightfully belongs to the disease, and not simply to the relationship.

Step 9: I need to focus on and enjoy what my relative can still do.

In the professional literature, much emphasis has been placed upon helping caregivers deal with the impaired family members' "problem behaviors." Much less emphasis has been placed on understanding who the person was and still is. Caregivers have frequently reported that what helps them through the process of caregiving is to be able to see who their relative "is" in the present, as well as appreciate who this person "was" in the past. Enjoying the good moments for what they provide is commonly seen by caregivers as a way of helping themselves through their present difficulties. Focusing on what the person can still do also maintains care-receiver independence and prevents "excess disability."

Step 10: I need to depend on other relationships for love and support.

As the dementia progresses, the care-receiver is less and less available to the caregiver as he or she has been in the past. Caregivers often report that one of the most difficult aspects of caregiving is the loss of this person who once "was." A daughter remarked, "We are losing my mother piece by piece."

As this process evolves, caregivers must increasingly look to other family members and friends for the love and support that the impaired family member once provided. Caregivers need to understand that a desire to be cared about and supported by others is a normal human response, and that it is essential to have these needs met in some way.

Step 11: I need to remind myself that I am doing the best I can at this very moment.

Caregivers must realize that they will not handle every situation "perfectly," and that at times they will become impatient and angry with the care-receiver. They will always be able to see things they may have done differently or better. However, it is important for caregivers to acknowledge their human limitations, develop a sense of acceptance of themselves, and accept how they have managed a particular situation. While "second guessing" and feelings of guilt are common with caregivers, it is important for caregivers to immerse themselves in positive reinforcement so that their precious time and energy are not siphoned off into thoughts that are self defeating.

Step 12: A Higher Power is available to me.

Many caregivers report that their sense of a Higher Spiritual Power has assisted them through many difficult situations, and that this same power has been what has helped them to find meaning through their caregiving experiences. More recently, caregivers have reported that a book of prayers specifically related to Alzheimer's disease has been a useful resource.* However, other caregivers have strongly challenged the use of a Higher Power because of their own beliefs. We draw from Alcoholics Anonymous and other approaches that suggest we are not imposing a set of beliefs on other persons, but that we do encourage caregivers to develop their own conception of this Higher Power and how this power may work in their own lives through the caregiving situation.

In conclusion, the Twelve Steps For Caregivers incorporate the coping strategies of persons in our research project who seem to meet caregiving demands with greater confidence and less stress. We share these steps with other caregivers and encourage them to develop whatever personalized statements will help increase their understanding and acceptance of caregiving challenges.

*Murphey C., Day to Day: Spiritual Help When Someone You Love Has Alzheimer's, Westminster Press, Philadelphia, 1988--available to borrow at the Caregiver's Center.

Special thanks to "The American Journal of Alzheimer's Care and Related Disorders and Research" (Vol. IV, No. 6, p.38-42) for the article.


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The Alzheimer's Association - USA

Alzheimer's Disease Resource Center: The Mayo Clinic

Alzheimer's Disease - Relevant Web Sites - Alzheimer

Telecity USA - Human Service Agencies

New Brain Scan Differentiates Dementia

The Ribbon - excellent site ! Be sure to visit

"The 36-Hour Day" (Third Edition) By Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H. A JOHNS HOPKINS PRESS HEALTH BOOK

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