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.

gruntzooki via Flickr

If you, or a loved one, is a resident of, or is considering, assisted living, or a nursing home, a long-term care (LTC) ombudsman may be able to help. LTC ombudsman help resolve residents’ complaints, provide information and assistance, advocate for residents’ rights and quality of care, and advocates for system and legislative changes. The LTC ombudsman has the power, based on federal and state law, to protect residents’ rights.

Resolving Residents’ Complaints

The long-term care ombudsman can help residents of LTC facilities who have concerns and complaints about their care or services they receive. LTC ombudsmen have a standardized classification scheme for the types of cases that they handle. The seventeen major categories are listed below and are instructive of the kinds of issues that residents may face in LTC settings:

• Abuse, Gross Neglect, Exploitation
• Access to Information by Resident or Resident’s Representative
• Admission, Transfer, Discharge, Eviction
• Autonomy, Choice, Preference, Exercise of Rights, Privacy
• Financial, Property (Except for Financial Exploitation)
• Care
• Rehabilitation or Maintenance of Function
• Restraints – Chemical and Physical
• Activities and Social Services
• Dietary
• Environment/Safety
• Policies, Procedures, Attitudes, Resources
• Staffing
• Certification/Licensing Agency
• State Medicaid Agency
• System/Others
• Complaints About Services in Settings Other Than Long-Term Care Facilities or By Outside Provider

According to the Administration on Aging, for the most recent year available (2007), “Care” has the greatest number of complaints; about 27%. Care is a broad category that includes accidental or injury of unknown origin, falls, improper handling, failure to respond to requests for assistance, failure to follow plan or physician orders, improper administration of medicines, personal hygiene, and toileting/incontinent care among others.

Environment (air/temp, cleanliness, building, etc.) comes in second with about 11%, closely followed by Autonomy (et al.) at 10% and dietary at about 8%. Detailed statistics, both national and by state, are available from the Administration on Aging LTC Ombudsman National and State Data page.

Information and Assistance

Ombudsmen do more than handle complaints. If you have questions on alternatives to nursing home care, or about your rights in a LTC facility, or on alternatives in long-term care, an ombudsman may be able to help you. Some provide witnessing services for advance health care directives. An ombudsman may be able to attend a resident care plan meeting, or a resident or family council meeting.

Advocates for system and legislative changes

State and regional ombudsman programs work with other advocacy organizations to recommend legislation and regulatory changes that affect LTC residents. They routinely serve on boards and committees of other organizations and actively advocate for policies to promote quality of care.

The National Long Term Care Ombudsman Resource Center is a great place to get a start in understanding what an ombudsman can do for you. Probably the most important page is the ‘Ombudsman Locator‘  where you can find state and local help.

Related Links

• Detailed description of ombudsman complaint codes (MS Word)
• Senior Help Forum – State and Local Resources Page

In the age of the Internet and having information at your fingertips, it’s easy to feel a little let down by the tools available. For instance, we posted recently on Medicare’s updated Nursing Home Compare Site, but even that we had to describe it merely as ‘a place to start’. Medicare’s site is only adequate at providing some of the information you’ll need in making a choice.

While this inadequacy of online resources for finding places to visit continues to disappoint, we were heartened to learn about Eden Alternative. Named after, “the very first place where humans were supposed to live”, Eden Alternative is a not-for-profit organization focused on, “remaking the experience of aging and disability”. Eden was founded by Dr. William Thomas, a doctor who specializes in geriatric medicine and elder care. Thomas clearly saw what was wrong with the existing nursing homes and the loneliness, helplessness and boredom that they imposed on their residents and chose to do something about it.

I struggled for some time over how to describe Eden Alternative. At one level, it has to do with a philosophy about how we should live our lives, including when we’re in need of nursing care. At another level, it has to do with introducing plants, animals and children into nursing homes. They also provide, “education and resources for improving quality of life for our Elders and for recapturing a meaningful work life for their Caregivers.” I think that last one is particularly important. While people are certainly motivated by their compensation, it’s been proven over and over that a satisfaction in the work that you do is a far greater motivator.

If I had to summarize Eden Alternative, I’d steal two phrases, “A life worth living” and “institutions control, habitats nurture”. There’s more to it than I can describe in one post, so please take some time and check out their site: Eden Alternative.

Here are some additional links you’ll find valuable:

• A Nursing Home Alternative – NewsHour with Jim Lehrer with transcript and video
• ChangingAging.org – Dr. Bill Thomas’ blog
• & Thou Shalt Honor – The Eden Alternative – PBS
• Eden Registry – To find an Eden registered home, mentor, Eden Educator in your state

And if this is something you’d like to find in a nursing home, then donate to Eden.

POLST stands for Physician’s Order for Life Sustaining Treatment.

A POLST Paradigm form is a brightly colored, medical order form, used to write orders indicating life-sustaining treatment wishes for seriously ill patients. It addresses two needs. It turns treatment wishes of an individual (something you might find on an advanced directive) into actionable medical orders for emergency responders, and then makes it portable.

It solves the problem that EMS generally can’t act on medical wishes for withholding treatment unless a doctor is involved. The POLST document is signed by the patient and their doctor in advance of the possibility of the arrival of emergency care. It doesn’t take the place of an advanced directive because it’s only used in very specific situations. There’s a great FAQ from the Oregon site and a Word document from the Washington State Aging & Disability Services Administration.

The Oregon POLST covers the following areas:

• Cardiopulmonary Resuscitation (CPR) vs Do Not Resuscitate (DNR)
• Medical Interventions
• Antibiotics
• Artificially Administered Nutrition

It’s not available for use in every state, though there are efforts in many states to adopt the POLST Paradigm. You can see which states honor them on the POLST site. As of September, 2008 there were about nine states that honor a POLST.

As of December 1, 2008 the pension can pay as much as $23,396 for aid and attendance for a veteran and their spouse, assuming that medical expenses, including necessary medical care, consumes all of their income. The amount varies based on need. You can see some examples of how the pension is calculated here.

In order to qualify for the pension, there are a number of service, medical and financial requirements that have to be met. According to the VA site:

Pension is a benefit paid to wartime veterans who have limited or no income, and who are age 65 or older, or, if under 65, who are permanently and totally disabled. Veterans who are more seriously disabled may qualify for Aid and Attendance or Housebound benefits.  These are benefits that are paid in addition to the basic pension rate.

Generally, you may be eligible if:

* you were discharged from service under conditions other than dishonorable,

AND
* you served at least 90 days of active military service 1 day of which was during a war time period. If you entered active duty after September 7, 1980, generally you must have served at least 24 months or the full period for which called or ordered to active duty (There are exceptions to this rule),

AND
* your countable family income is below a yearly limit set by law (The yearly limit on income is set by Congress),

AND
* you are age 65 or older, OR, you are permanently and totally disabled, not due to your own willful misconduct.

If qualified based on service, the financial situation of the veteran and whether there is still a spouse in the picture will determine how much the government is likely to pay.

You can read more about it on the Department of Veterans Affairs site.

I’ve heard from some that it can take as much as 12 months to be approved for the pension. The catch is that the veteran often has to be incurring assisted living, or nursing home, costs to qualify for the pension, meaning that those expenses have to be funded out of pocket until (if) the pension is approved. One approach is to apply for the pension before it is needed financially in order to determine that the veteran qualifies based on the military service first. Assuming that they were rejected for financial reasons only, they can reapply for the pension once they move into a care facility.

The only advice that SHF gives to veterans with regard to the pension is to see a Veteran Service Officer near you. They are trained to give veterans the guidance they need.

The National Association of Social Workers (NASW) reports that this dramatic increase in older Americans will also increase the demand for age related services, programs, and policies.

Registered social workers can help with a host of issues: finding appropriate housing, finding healthcare resources, etc.

The NASW website provides visitors with a tool to search for social workers in their area who specialize in the unique “issues” that they and/or their loved ones are currently facing.

Note: We must stress that we and the NASW do not endorse any of the social workers in the data base.  It is solely a tool for you to begin to determine who offers services in your area.

We publish SHF because we’ve spent a lot of time researching on our parents’ behalf and thought people shouldn’t have to wander in the wilderness like we did. Yes, we got some help along the way, and when we did, it was a great stress reducer. That’s why when we find a resource like SHIP (State Health Insurance Assistance Program), we cheer and cry, “Why didn’t we find this sooner?!”

In their words,

The State Health Insurance Assistance Program, or SHIP, is a national program that offers one-on-one counseling and assistance to people with Medicare and their families. Through federal grants directed to states, SHIPs provide free counseling and assistance via telephone and face-to-face interactive sessions, public education presentations and programs, and media activities.

The site’s big features are two locators. One will help you find a state SHIP and the other will help you find a counselor. One other feature of their site is promotional profiles, which are PDFs for most of the states that describe that state’s program. But the locators are the big deal here. While we haven’t done a complete census, it looks like most counties have a SHIP program.

Check it out and let us know what you think.

We all want a Consumer Reports styled authority to point us to the best buy, and to some degree the Medicare site fulfills the need, unfortunately just as with Consumer Reports it’s difficult to make a five-star rating work for everything. The Medicare site only fails if you have the wrong expectations–that the data presented is all you’ll need to make a decision. It’s not.

Arguably, the site’s biggest failure is what will be the most appealing to users: the star ratings. Just like many things on the web, once you do a search you can sort the results. Why not sort the facilities on the overall rating and pick the best one? Because there are other factors that should be considered before winnowing your list. Another reason is that a facility may receive a lower star rating even though they’ve already address the issues cited.

That said, you can use Medicare’s site to learn more about the facilities in your area. Just be sure to spend time researching elsewhere.

Here are some other resources you may want to consider:

• AARP: Choosing a Nursing Home – A former industry insider offers 10 essential tips for selecting a home for a loved one
• Medicare’s Guide to Choosing a Nursing Home (PDF – look for it at the bottom of the page)
• Consumer Reports: Nursing Home Guide (note: it doesn’t appear that their Nursing Home Quality Monitor has been updated since August, 2006)