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HIV-associated Neurocognitive Disorder (HAND)

Since the start of the AIDS epidemic more than three decades ago, doctors, family and friend caregivers, and patients have observed that some people with the disease experience decline in brain function and movement skills as well as shifts in behavior and mood. This disorder is called HIV-associated Neurocognitive Disorder, or “HAND.” Although advances in antiretroviral therapy from the past two decades have decreased the severity of HAND, symptoms still persist in 30–50% of people living with HIV. For many people, these symptoms continue to affect activities of daily living.

Legal Planning for Incapacity

As you face aging and the need to make plans for your future, you face having to make legal decisions about many aspects of your lives. These legal decisions not only protect you from others doing things you might not like to you, they also protect family and loved ones by giving them guidance in the care that you would like to receive. After completing all the legal paperwork, the next step is to sit down and talk to family about the decisions you have made and why.


Conservatorship and Guardianship

When someone is no longer able to handle his or her own financial or personal affairs, the court can appoint an individual or professional to act on behalf of the incapacitated person. When a minor child is involved, it is generally called a guardianship. When an adult needs someone, it is called a conservatorship. However, states define these terms differently and you need to consult an attorney in your state to determine what the law is.

Advance Health Care Directives and POLST

The Advance Health Care Directive (ADHC) allows you to appoint someone (health care agent, attorney-in-fact, proxy or surrogate) to make a decision for you if you can not speak for yourself. It is also called the Durable Power of Attorney for Health Care, Natural Death Act, Directive to Physicians or a Living Will. (The living will is slightly different; check on what is recognized in your state.) Every state recognizes the ADHC, but states have their own forms, as laws vary from state to state.


Emergency Preparedness Checklist for Caregivers

Floods, earthquakes, tornados, snowstorms . . . wherever you live, there likely exists the potential for a variety of natural disasters that can create an emergency situation. When you're caring for a loved one, it's times like these that you'll be thankful for having prepared for such a situation.

Please use this checklist to organize your emergency preparations. It should be used in conjunction with the Where to Find My Important Papers checklist.


Transferring a Person

Tips to help caregivers move or transfer a loved one with mobility limitations

  • Learn proper body mechanics. Ask for a Physical Therapy referral from your physician to teach you how to use your body so you don’t get hurt.
  • Save your back. If you feel a strain, get help; don’t do it alone. This is for your safety and the safety of the person you are trying to move. If you hurt your back, you aren’t going to be able to care for someone else.

Caregiver Self Care: Caring for You

The care you give to yourself is the care you give to your loved one.

  • Learn about the disease your loved on has.  Find out about what is happening now and what will happen in the future with this disease.  The more you know, the more you will be able to plan.
  • Use community resources.  The more you let these services help you, the less you have to do.  There are places to get help:
    • Your local Area Agency on Aging
    • Paratransit
    • Meals on Wheels
    • Day Care Programs

Feeding and Nutrition (for dementia)

  • Avoid food fights. Make mealtime as pleasant as possible. Encourage someone to eat but don’t demand, cajole or threaten.
  • Someone with dementia may not know what he/she wants to eat. If giving choices, give only two things to choose between. Even if a choice is made, the person may not want it when it is presented. Don’t take it personally. If you know his/her favorite foods, have them available for back up. Favorite foods might change.

Caring for Someone with Incontinence: Emotional and Social Issues

When asked, many family and partner caregivers say that heavy incontinence would tip their decision towards moving a loved one to a nursing home. What makes this such an emotionally difficult turning point? Incontinence can be the last straw in a stressful caregiving situation. Covered below are some of the issues that make incontinence so difficult to deal with, and tips on how to cope with these concerns.

Living with Incontinence: Social and Emotional Challenges

Most people who live with incontinence do not tell anyone about it, often not even their doctor(s) and especially not their friends. Family members might be the ones to bring up the subject, especially if the house is beginning to smell or furniture is soiled. It’s not an easy conversation to have.  If you are faced with incontinence, know that you are not alone. One in 15 million Americans are searching for ways to deal with this very personal issue. Here are typical feelings associated with continence issues and some coping strategies to consider:


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