Keys to Staying at Home Longer With Alzheimer's

Most Americans with dementia who live at home have numerous health, safety and supportive care needs that aren't being met, a new study shows.

Any one of these issues could force people with dementia out of the home sooner than they desire, the Johns Hopkins researchers noted.

 

Routine assessments of patient and caregiver care needs coupled with simple safety measures -- such as grab bars in the bathroom -- and basic medical and supportive services could help prevent many people with dementia from ending up in a nursing home or assisted-living facility, the researchers added.

"Currently, we can't cure their dementia, but we know there are things that, if done systematically, can keep people with dementia at home longer," said study leader Betty Black, an associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. "But our study shows that without some intervention, the risks for many can be quite serious," she said in a Hopkins news release.

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For the study, published in the December issue of the Journal of the American Geriatrics Society, Black's team performed in-home assessments and surveys of more than 250 people with dementia living at home in Baltimore. They also interviewed about 250 family members and friends who provided care for the patients.

 

Ninety-nine percent of patients and 97 percent of caregivers had one or more unmet need in areas such as safety, health, meaningful activities, legal issues and estate planning, assistance with activities of daily living and medication management.

 

Ninety percent of those needs were safety-related. More than half of the patients had inadequate meaningful daily activities at home or a senior center, and one-third of patients still required a dementia evaluation or diagnosis.

 

More than 60 percent of the patients needed medical care for conditions related or unrelated to their dementia. This is a serious issue because dementia patients are more likely to have a serious illness for which they may eventually be hospitalized, according to Black.

 

"This high rate of unmet medical care need raises the possibility that earlier care could prevent hospitalizations, improve quality of life and lower the costs of care at the same time," she said.

Most caregivers also had numerous unmet needs, including lack of access to support services and education about how to best care for their loved one.

 

About 5.4 million people in the United States have Alzheimer's dishttp://www.zazzle.com/artnip*ease and other types of dementia, and 70 percent are cared for in the community by family members and friends.


Dementia Signage
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Home Care or a Congregate Setting: Which is Best for your Parent?

Many children of older adults have heard their parents implore them to: "Please never put me in a nursing home!" Unfortunately, some of us find ourselves faced with a difficult decision when our parents become debilitated by disease or compromised with memory impairment issues.

Today there are congregate settings, assisted living and supportive living programs in particular, that offer alternatives to the nursing home. However, while aesthetically more pleasing than most nursing homes, these options still are often viewed by older adults to be inferior to receiving care at home. But before one can conclusively say that care provide by a paid care giver in one's own home is the best option, there are many factors to consider:

1. Home care is costly, and except when the care required qualifies for Medicare reimbursement, most home care services must be paid for privately. A good long term care insurance policy will cover home care but not many older adults own such policies. Home care, if needed 24 hours a day, seven days a week will likely cost about the same as a nursing home stay and perhaps more than assisted living.
2. The level and type of socialization your parent experiences will vary greatly from care provided at home to care provided in a congregate residential setting. In most cases when 24-hour care is needed, there will be two live-in caregivers assigned to a case. Many great friendships have been formed between caregivers and clients but the social life of the client in a home care setting will be very narrow. In a residential setting (nursing home, assisted living, supportive living, or continuing care retirement community), the person will be exposed to other older adults and staff and who can provide a rich social experience.
3. The individual attention in a home setting can provide an opportunity to focus on favorite activities but the array of cultural experiences should be broader in a congregate setting.
4. Proper nutrition can often be accessed more readily in a congregate setting but attention to favorite foods might be more readily facilitated with home care.

From my own personal and professional experience, I have found that most people wait too long before electing assisted living care. A well-run assisted living facility can offer a wonderful living experience, often in an elegant setting. The cultural activities available on-site and through scheduled outings can make for a rich experience. The dining program is often very upscale and offers great variety.

However, when a person residing in assisted living begins to requires skilled care, avoiding nursing home placement can only be accomplished by augmenting current care with paid caregivers. For those with unlimited resources this can be the best alternative.

Honoring mom and dad's wishes for end of life care is paramount. Have the conversation well before a need exists so you can be sure that you are doing the right thing for them if the time comes when they need assistance with daily activities.

Dementia Signage for the Home

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How the Healthcare System Can Work Against You

Administering the best possible care (i.e., changing dressings daily, using the most appropriate medications and providing other necessities) may be very costly. Such care may not be covered by your insurance policy. You will almost certainly have out-of-pocket expenses for things that are not considered "medically necessary."

Instead of providing greater coverage, having two insurance policies could actually mean less coverage. Each plays against the other -- delaying or actually curtailing benefits. Make sure you have a clear agreement as to which payer is "primary."

A spouse is legally responsible for the partner's bills and his/her income is included in determining Medicaid eligibility. Unmarried couples are considered as single individuals, making it easier to get Medicaid benefits, which may include home care.

If someone tells you "Medicare (or another insurance) won't pay for it," don't stop there. Check it out yourself through your State Health Insurance Assistance Program, the Medicare Rights Center at (212) 869-3850 or online at www.medicarerights.org, or through another independent source.
- Artnip Dementia Signage for the Home

The Right to Home Care

If you are caring for a loved one with a long-term illness such as dementia or cancer, it is not uncommon for healthcare providers to make suggestions that you or your loved one disagree with or simply can't afford. Here's a few suggestions for asserting your loved one's right to have home care:

• You can say no if hospital discharge planners want to send your loved one home and you feel you are not prepared to provide the necessary care at home. Be flexible but firm as you negotiate a feasible plan.
• Request an aide or home care nurse to come to the hospital and help you bring your loved one home, including riding in the ambulance, setting up the bed and other medical equipment.
• Make sure your loved one has the proper transportation to and from outpatient visits.
• Ask for a re-evaluation of the situation at a specified time (a few weeks or months).

 

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