For more information, call the COPSA Alzheimer’s Helpline at 800-424-2494Comprehensive Services on Aging (COPSA) Institute for Alzheimer’s Disease and Related Disorders, University Behavioral Healthcare (UBHC) – University of Medicine and Dentistry of New Jersey (UMDNJ)

© University of Medicine and Dentistry of New Jersey, 2012 ALL RIGHTS RESERVED

New Jersey Aging and Disability Resource Connection 877-222-3737www.adrcnj.orgThis easy-to-navigate website is a great starting point, especially for new caregivers. Information about state and local agencies and programs is available in dozens of different languages.

COPSA Institute for Alzheimer’s Disease and Related Disorders 800-424-2494ubhc.umdnj.edu/COPSAThis website provides an over-view of dementia and informa-tion about dementia day care and medication. Here you’ll find brochures, information about sup-port groups, and two engaging and informative videos, “Circle of Harmony” and “Bridges: Support through Partnerships in Caregiving”.

ADEAR 800-438 4380www.alzheimers.orgThis website is a service of the National Institute on Aging. Here you can learn about the latest government research on Alzheim-er’s disease, and review articles on a variety of topics and resources.

AARPwww.aarp.orgIf it’s related to aging, this web-site has it. You’ll find resource information, webinars, articles and research. Just type the word caregiver in the search tab and start scrolling.

Selecting a Long Term Care Setting – A Guide for New Jersey Consumershttp://web.doh.state.nj.us/apps/healthfacilities/fssearch.aspxIf you’re looking for day care, assisted living or a nursing home, this is the website for you. The Facilities Database allows you to search by county, name, or type of facility. There is also lots of helpful information on how to choose a nursing home and understanding the different levels of care.

Medicare.gov Nursing Home Comparehttp://www.medicare.gov/nursinghomecompare/search.aspxNursing Home Compare has detailed information about every Medicare and Medicaid-certified nursing home in the country. It’s a good place to start but it doesn’t take the place of a personal visit. The data base is user-friendly and you can also learn about alternatives to nursing homes.

Partnership for Prescription Assistance 888-477-2669http://www.pparx.orgThe Partnership for Prescription As-sistance helps those without prescrip-tion drug coverage get free or low-cost medicines through the public or private program that’s right for them.

ClinicalTrials.govhttp://www.clinicaltrials.govClinicalTrials.gov provides regularly- updated information about federally and privately-supported clinical research in human volunteers. You can search for trials by medication name or by illness. The database provides information about a trial’s purpose, who may partici-pate, locations, and phone numbers for more details.

For more information, call the COPSA Alzheimer’s Helpline at (800) 424-2494Comprehensive Services on Aging (COPSA) Institute for Alzheimer’s Disease and Related Disorders, University Behavioral Healthcare (UBHC) – University of Medicine and Dentistry of New Jersey (UMDNJ)

© University of Medicine and Dentistry of New Jersey, 2012 ALL RIGHTS RESERVED

Experts all agree … Caregivers who receive help and

support are less stressed and more able to care for their

loved one longer. Yet asking for help, or even acknowl-

edging that we need it, is not easy. Sometimes there may

be no one to ask. More often, it is our own beliefs about

caregiving that prevent us from reaching out.

“I should be able to take care of my mother (or father, or husband, or wife) myself”Under normal circumstances this would be true, but caring for someone with dementia is beyond normal circumstances. Needing help does not mean you are not doing a good job, or that you are being lazy or self-centered. It’s simply an acknowledgement of how much is involved in caring for someone with dementia.

“I don’t want anyone to know how bad things are.”Caregivers sometimes feel disloyal talking about their loved one’s decline. They may not feel ready to discuss the situation or they may want to protect family members from the distress of knowing how impaired the person is. While this is understandable, it can also be very isolating. Sometimes it helps to talk to people outside one’s circle of friends and family. Telephone helplines and support groups can be very useful in this regard.

“No one can care for him or her the way I do.”This is true. No one is going to care for your loved one the way that you do. But it is also true that your loved one can receive adequate care from someone else. Some people with dementia are upset when their usual caregiver is not around and it may take time for them to adjust. Others can easily enjoy the company of another person for a period of time.

Asking For HelpMake a list of people who you can ask for help or who have offered to help you. Do not be vague in your requests. Be specific. “Can you stay with your Dad on Thursday afternoon while I go to the store?” “Can you bring the dog to the vet for me?” “Can you call and make doctor appointments?” “Can you call this agency and ask about their services.” “Can you help me fill out this application for home care?” Remember, friends and families can’t know what you need unless you tell them.

Learning a New Skill

Becoming a caregiver involves learning many new skills. “Asking for help” is one of those skills. With time and practice it can become easier. The hardest part is getting started.

For more information, call the COPSA Alzheimer’s Helpline at (800) 424-2494Comprehensive Services on Aging (COPSA) Institute for Alzheimer’s Disease and Related Disorders, University Behavioral Healthcare (UBHC) – University of Medicine and Dentistry of New Jersey (UMDNJ)

© University of Medicine and Dentistry of New Jersey, 2012 ALL RIGHTS RESERVED

Tell the staff about your loved oneBe sure to let the staff know about your loved one’s personality, history, hobbies, interests and proudest moments. They can use this information to establish rapport and develop appropriate programming.

Let them know about your routine at home Do they usually take a nap in the afternoon? What do they like to eat for lunch? Do they take a walk in the morning? Does your loved one become more confused in the afternoon or restless when they have to use the bathroom?

Regarding changes at homeChanges in routine, even pleasant ones such as visits from grandchildren, can be difficult for people with dementia. This response will vary from person to per-son and may not always be expressed in the way one would expect. It’s important to let day-program staff know, so they will understand if there is a difference in your loved one’s behavior, mood or level of functioning.

Share your strategies for keeping your loved one happyAs you care for your loved one, you no doubt have come up with ways to make them happy. Perhaps you have turned on certain music when they are irritable. Maybe you take them for a walk when they are rest-less or turn on their favorite TV show.

About behaviors that are difficult to managePerhaps your loved one has trouble sleeping at night, or you have difficulty getting them dressed? Maybe they insist on getting ready for work every morning although they have been retired for twenty years. Behavior problems can be tough to manage. Don’t go it alone. Discuss behavior problems with staff, so to-gether you can develop strategies that will help. You might have to try several approaches to find one that works. This can be a matter of trial and error so be sure to keep them posted about how things are going.

If there is a sudden and acute change A sudden and acute change in behavior, mood or functioning can be a symptom of a medical issue such as a urinary tract infection (UTI), dehydration or a problem with medication. It’s important to let both the staff and the doctor know about this as soon as possible.

For more information, call the COPSA Alzheimer’s Helpline at (800) 424-2494Comprehensive Services on Aging (COPSA) Institute for Alzheimer’s Disease and Related Disorders, University Behavioral Healthcare (UBHC) – University of Medicine and Dentistry of New Jersey (UMDNJ)

© University of Medicine and Dentistry of New Jersey, 2012 ALL RIGHTS RESERVED

Through Caregiver Coaching, we point out their strengths as caregivers and provide emotional support. This approach empowers caregivers and decreases stress because it improves their confidence and sense of competence.

Elements of caregiver coaching include:

• Developing an alliance through empathy and under-standing

• Pointing out caregiver strengths and skills

• Focusing on caregiver feelings

• Normalizing changes and reframing behavior in terms of the disease

• Developing concrete strategies

• Encouraging and providing follow up

Empathy and UnderstandingEmpathy and understanding are basic to any kind of sup-portive counseling. We need to make statements that sum-marize what a caregiver has said in a tone that conveys our understanding and appreciation of their experience.

We can not make assumptions. If we respond by saying “That must be overwhelming.” when a husband says he has been caring for his wife alone, he may become defensive and say “It’s not overwhelming, it’s my job.”

Identifying Caregiver Strengths and SkillsMost caregivers do not recognize all the positive things they are doing for their loved ones. It’s our job to identify these for them. We can help make caregivers aware of their own strengths and skills by making statements like, “You do an amazing job getting your husband up, dressed, and to the program three times a week.” or “You are very good at dis-tracting your mother when she gets upset.”

Focus on Caregiver FeelingsIn most interactions, caregivers are focused on the patient. After we have addressed their concerns about a loved one, we need to change the focus. Asking “How are you doing with all of this?” or “What do you find most difficult to deal with?” are simple questions that encourage caregivers to express how they are feeling.

Normalize Changes and Reframe Behaviors in terms of the diseaseUnderstandably, caregivers are often baffled by the changes in a loved one with dementia.

Education regarding areas of the brain and their connection to abilities and skills is important and is often a revelation to the caregiver.

Simple explanations work best. For example, “Alzheimer’s disease first damages the area of the brain that handles short-term memory, so your father may remember details from his childhood, but not recall what he had for breakfast, or even if he had breakfast.

Changes in personality are another challenge. If there is a radical change, it is easy for families to identify it as being caused by the disease. However, when lifelong traits are exaggerated it is more difficult. Families often assume that this behavior is deliberate or that the person is being unreasonable.

Developing Concrete StrategiesCaregivers need concrete help as much as they need sup-port and education. We can help them develop strategies for dealing with difficult behaviors and encourage them to develop strategies of their own. In this way, we enable caregivers to be the problem solvers. When we do this, we acknowledge the importance of their role and their expert knowledge of the person, and this increases their ability to cope.

Encouraging and Providing Follow upWe all know that management techniques are not successful in every case. We never want the caregiver to have the im-pression that things didn’t go well because they did some-thing wrong. It’s important to encourage the caregiver to let us know if a particular intervention doesn’t work, so that we can discuss other approaches with them.

This is also true when we refer caregivers to services. We want them to have realistic expectations. We need to coach them as to how to negotiate the system. For example, we should let them know if they can expect to be kept on hold for a long time or if a particular program needs extensive financial records. Then, we need to continually check in to see how they are doing with these referrals and if they were actually helpful.

Caregiver Coaching is an open dialogue between profes-sionals and families. It is flexible enough to meet their changing needs and it enables us to support caregivers throughout the duration of their journey.