Being diagnosed with Alzheimer’s Disease is a scary thought for everyone, but the good news is if it is caught early, there are several medications that can slow down the progression of the disease, delaying the need for fulltime or nursing home care. The problem is that the earliest signs come on so slowly and are so intermittent, that most people and their families just chalk them up to getting older and live in denial that anything is really wrong.

A terrific guidebook on the subject is “Elder Rage” by eldercare advocate, Jacqueline Marcell, who cared for two parents with the debilitating disease. Her bottom-line message is the importance for everyone to understand the warning signs and to seek help immediately.

TEN WARNING SIGNS OF ALZHEIMER’S

(Reprinted with permission of the Alzheimer’s Association)

1. Memory loss

2. Difficulty performing familiar tasks

3. Problems with language

4. Disorientation of 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

If you notice any of these signs in your loved one, write them down and keep track, so you can share them with the doctor. Then, ask for a referral to a neurologist who is specialized in dementia, who will do a battery of blood, neurological, memory tests, and possibly PET scans (and rule out the many reversible dementias), so an accurate diagnosis can be obtained and appropriate treatment can be started as soon as possible.

  About Jacqueline Marcell

Jacqueline Marcell is a former television executive whose caregiving experience resulted in her first (best-selling) book “Elder Rage”, a Book-of-the-Month Club selection being considered for a feature film. Over fifty endorsements include: Hugh Downs, Regis Philbin, John Hopkins Memory Clinic, Duke University Center for Aging, and the National Adult Day Services Association who bestowed their Media Award. Marcell also hosts “Coping With Caregiving” an Internet radio program (http://www.wsRadio.com/CopingWithCaregiving) and is an International speaker on Alzheimer’s and eldercare awareness and reform. www.ElderRage.com

A Professional Care Managers View

In our ongoing series of interviews, CareGrade.com spoke with professional care manager Michele Tyson C.M.C. to find out what a professional care manager looks for in assisted living facilities.

CG - What do you, as a care manager; look for in an assisted living facility?

MT – Quality of care is my major concern. I want to know if there is a nurse available, is the placed staffed by home health aides, what are the staffing ratios.

I also look to see what levels of service are available. Do they offer special services such as secured dementia unit or dementia programs? Do they offer a higher level of care or is this a facility for higher functioning people only.

Lastly, I look to see where the facility is located. Is it close to major hospitals, doctors and shopping? Is it on a busy road or a quieter location?

CG - What problems do you most often encounter?

MT – The most common problems I see are when people are not happy with the food, or when there are care issues.

CG - What questions should a family ask when speaking with an agency and trying to make a choice?

MT - Is there a registered nurse available 24 hours per day?

How are medications handled?

What services are included in monthly fee and what additional costs do they need to be aware of?

What activities and programs are available?

Is transportation available, especially for doctors’ appointments?

Are special diets accommodated for?

CG - How long does it usually take for a person to move into a facility?

MT - If a bed is available, they should be able to get in within 24-72 hours as long as the physicals are completed and the other issues such as preparing to move are all taken care of. While a family can definitely make all the arrangement for moving into a facility by themselves, a geriatric care manager could make it easier and speed things up.

CG - What are the most difficult people to find assisted living for?

MT - Finding a facility with a secured dementia unit can be tough. There is often a waiting list for these. The other big challenge I see is finding a bed for a person with limited resources.

CG – Is there any other advice you would give a family looking for assisted living?

MT - Look early; don’t wait until there is a crisis situation where placement is absolutely necessary.

Schedule appointments to visit with several communities.

Ask if you can stay for lunch or dinner. Most communities will accommodate that without a problem

Home Health Care agencies can basically be broken down into two different models, the registry model and the employee based model. Both types can offer the services of nurses (RN’s, LPN’s), home health aides (HHA’s)/certified nurses aides (CNA’s), companions and other services such as physical therapy (PT) and occupational therapy (OT) The question for many consumers, what is the difference and which type is right for them.

Nurses registries have been around since the civil war. In this model, an agency does all of the background work, such as interviews, criminal background checks, reference checks and any other checks they feel necessary. Once a candidate has been approved, the registry will refer them to the person in need. The caregiver is considered an independent contractor by the agency and not supervised directly by the agency. This is also called the consumer directed model as the consumer is the person in charge.

With the employee based model, the agency does a similar type of screening, however, instead of referring the caregiver to the consumer, the agency employs them.

Each model has its’ pros and cons.

Pros of the registry model include

• Cost of the service is generally lower than agency model.
• Caregivers usually earn more, which tend to attract a higher quality of caregiver.
• Consumer is in total control. They decide what gets done, when it gets done and how it gets done. They decide if the caregiver stay on the job or needs to be replaced.

Cons of the registry model include:

• Person is not supervised by agency nurse.
• Caregiver is not covered by WC insurance.
• Family may be the employer and need to take out payroll taxes.

Pros of the agency model include:

• Caregivers are covered by workers comp and bonded by the agency.
• Caregivers are supervised by agency nurse.
• Agency is alway the employer and deducts all appropriate taxes.

Cons of the agency model include:

• Cost tends to be higher.
• Caregivers do not earn as much as those on the registry side.
• Agency has control over when and where caregiver performs their duty. Agency can pull a caregiver if they need that person for a different case.

You will find supporters for both sides. It is up to you to decide which type of business is right for you.

To learn more about nurses registries, go to www.privatecare.org

To learn more about employee based agencies, go to

Retired Supreme Court justice Sandra Day O’Connor’s husband has found love from another resident at his assisted living facility in Phoenix Arizona. O’Connor left her position on the Supreme court in 2005 to take care of her husband, who is suffering from Alzheimer’s disease.

This is obviously a woman who cares very much for her husband, and yet she is not upset about his new arrangement. Different people react differently to situations such as this. O’Connor is a very intelligent woman and probably has a great understanding of what this disease does to people. It is probably difficult for her to see her husband with another woman, but at the same time she is probably just happy to see him in such an improved state of mind.

It does bring up several questions:

1) Is it OK for Alzheimers patients to do things that are normally not acceptable?

2) Is this really infidelity?

3) Is this something that should be encouraged for Alzheimer’s patients?

Are reviews the best way to judge home health care and assisted living? This is a question we have been hearing since we bagan caregrade.  We obviously feel very strongly in the power of honest reviews. A person using reviews has a great advantage over a person who is selecting a service without the same information. Reviews allow people to experience what others find good and bad with a particular business. Armed with this information, you should then ask appropriate and pointed questions to the businesses you are investigating. Reviews by themselves should not be the only criteria used to form an opinion.

People often ask us how to tell if a review is honest or not. It is very hard to know for sure, however we have taken steps to try and limit false reviews. On top of that, our professional reviews are done by certified geriatric care managers that  consumers can feel confident with. The combination of professional and user reviews makes for a powerful source of information. A wise shopper can then take that information and apply it to their other search tools and come up with a choice they can feel confident with. The information age we now live in creating an unparalleled opportunity for people to make decisions not based on hype and advertising money, but on honest, true information. Consumers are now in the drivers seat.

 

A Care Manager’s View of Home Care

 

CareGrade.com did an interview with professional care manager Liz Salston, LSW to find out what a professional care manager looks for in a home care agency.

 

CG -What do you, as a care manager, look for in a home care agency?

LS - I look for an agency that offers a comprehensive service, not just companionship. I want the client to be able to have medication assistance and hands on care from a home health aide should they need it. I also look for supervision from an RN.

 

Other things I look for include having consistency in terms of coverage, and a good relationship with the care manager, which includes feed back and quick responses to phone calls. Lastly, I want to see that an agency does a good job of screening the home and the client’s needs in order to help make the right match with a caregiver.

 

CG - What problems do you most often encounter?

LS - I have had some issues with the professionalism of agencies when communicating information about their clients. On a broader scale, making good matches between the client and caregiver is a big problem. Agencies often fall short when taking all of the facts about a client in to account. They need to look at more than just the physical condition and consider things such as the client’s interests, quirks and personality. They also need to consider the caregiver’s needs. For example, an agency should be careful not to send a person with allergies into a house with pets they are allergic to.

 

Response time when filling cases, especially for call outs and emergency fill-ins tends to be another problem. An agency should be staffed well enough that it does not have gaps in coverage.

 

CG - What questions should a family ask when speaking with an agency and trying to make a choice?

LS - People searching for care should ask the agency…

What happens if it is not a good match?

How quickly can you make a change if it is needed?

Do you have enough coverage if a person calls out?

.

CG - How long does it usually take to get service started?

LS - A good agency should be able to get a new case started within 48 hours. Sometimes they have to start with a temp until they can secure more permanent placement.

 

CG - What are the most difficult cases to fill?

LS – I find cases that are short term, less than two weeks, can be a challenge to get filled. It takes just as much work and costs the agency just as much to staff one of these cases as it does for a long term case. The agencies are just not as motivated. What they fail to recognize is that is that short term placements often result in long term cases over time. Agencies need to take this possibility into account.

 

Other cases I find hard to get staffed are when there is a racial bias. Unfortunately it is out there. I attempt to teach my clients and their families’ lessons in tolerance and acceptance when engaging home care services. Clients need to understand that the majority of workers in this field come from minority groups and that their priority should be the quality of care provided. Personal biases need to be put aside and relationship building will occur over time if given a chance.

 

 

Liz Salston is a social worker with 22 years of experience in the field of services for older adults. She has served as Director of Recreation and Social Services at the Martin and Edith Stein Assisted Living Residence and as a social worker at the Central New Jersey Jewish Home for the Aged in Somerset. She has run several socialization and respite groups at the Jewish Family Service of Southern Middlesex County and has worked as a social worker in HUD senior housing.

Liz holds dual Bachelor of Arts degrees in Sociology and Judaic Studies, a Master of Social Work, as well as a Master of Arts in Contemporary Jewish History.

 

She is a licensed social worker in the state of New Jersey, a member of the National Association of Professional Geriatric Care Managers, Inc., and the National Association of Social Workers.

 

You may reach Liz at www.salstoneldercare.com (732) 238-1775