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Ask the Helpline


The Alzheimer’s Association highly trained and knowledgeable 24/7 Helpline staff provides reliable information and support to all those who need assistance, with translation services available in 170 different languages. We serve people with memory loss, caregivers, health care professionals and the public. In the Ask the Helpline series, our staff answer some of our callers' more common questions, providing insight and next steps for those faced with the challenges of a dementia diagnosis.

A Almost every day one of us on the Alzheimer’s Association 24/7 Helpline is asked, “What do I do next?”

Melissa Tucker
SM, Helpline

This question could come from someone who has just been diagnosed or a family member struggling with a new challenge. There are so many questions that come up when you are dealing with dementia, and there is no one set of answers. Everyone’s situation is different; there really is no way to predict what will happen next.

So how do we answer this question?

We try to empower people with information and support. We can provide information directly from the helpline referrals, disease information and tips on communication or coping with behavior. The Association also provides support groups and online forums. But I think it is also crucial to encourage people to reach out for emotional support within their own communities. Whatever you are dealing with, it is easier if you have people who know what you are going through.

Unfortunately, sometimes people become isolated in the wake of a diagnosis. There is still stigma around dementia. People become ashamed and withdraw from family members, social groups and faith communities exactly when they most need the support these groups can provide. It is so important to overcome this impulse and share what you are going through with the people who care about you. Whether you are a person with dementia, or a caregiver or family member, you are going to need others.

Social engagement is an essential aspect of mental and physical well-being for both people with dementia and care-givers. As a caregiver, you may hesitate to ask people for help, but at some point you have to admit that you “can’t do it all.” Let people know when you need a break or a shoulder to lean on. Schedule time for yourself to participate in activities that give you inspiration and energy.

Staying connected is also important for people with dementia. As many as 40% of people with Alzheimer’s disease may experience depression*. If you are feeling discouraged and tired, withdrawing from social activities can seem like a natural response. However, this withdrawal actually feeds the cycle of depression. It is important to keep engaged with people you care about as well as schedule activities you enjoy. Even if you don’t feel like participating in an event or activity at first, you may well find that you feel better afterward for having done so.

People with dementia can become frustrated in attempting activities that once were familiar and enjoyable to them. Sometimes this frustration can add to social isolation. Keep in mind that simple activities such as taking a walk, looking at photos or listening to music with a friend or loved one can be satisfying and enjoyable.

Many times people will conclude a helpline call by saying, “Thank you for listening. I feel so much better.” This in itself speaks to the power of connection. It is a privilege to work with our callers and to feel that we’ve been able to help. Keep calling, and keep connected!

*If you are experiencing symptoms of serious depression such as feelings of hopelessness, worthlessness, or thoughts of harming yourself of someone else, it is crucial that you reach out for help. Consult your physician or a mental health professional. You can also call the Helpline 24/7 and speak with an experienced counselor or social worker.

Resources:

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A Adult children who watch as one parent becomes overwhelmed by the responsibility of caring for their spouse frequently ask this question.

Richard Apple
SM, Care Navigation & Early Stage Engmt

The answer is difficult because each person is influenced by their unique combination of cultural beliefs and practices, their personality and their family history and dynamics.

A logical and heartfelt offer of help may be rejected and the resulting emotions may further strain the difficult situation.

There is no perfect strategy for “winning” this discussion. The key is to look carefully at Mom’s goal and take into consideration her fears as well as how family dynamics will factor into the decision. To prepare for the “ask,” it’s important to identify what might stand in the way of Mom’s ability to hear what is being said. If her goal is to keep her spouse at home until death, does she fear that accepting help is the first step in giving up control over that goal? Is she afraid that her spouse will become upset if someone outside the family is brought into the home and that this change will increase, rather than relieve, stress? Does she feel that accepting help is a sign of weakness? Does she have trouble expressing her emotions about the way the illness has changed her marriage? What does it mean to her to accept advice from her child if she has always been the one to give advice? Is there a history of similar discussions that will influence how the ideas will be heard?

Depending on the situation, it may be helpful to first spend time listening to her current concerns and fears regarding the future. Listening, rather than coming in with all the answers and pressing for a decision, may improve communication and help her to see her adult child as part of her team. Acknowledging fears may help set the stage for working together to identify strategies for addressing potential barriers. Developing a team mindset can strengthen a family’s resiliency in the face of difficulties. Be patient and see the issue of “accepting help” as part of an ongoing journey.

After setting the stage, the next step is to spend time talking about possible solutions and how they relate to the overall goal. Keeping her goal in the forefront helps Mom to feel ownership of the suggested changes. When a plan is identified, it is important that each team member understands that even well-crafted plans may have glitches. Seeing these problems as opportunities for improvement, rather than failures, helps to keep the focus on the long-term goal and avoid overreacting to setbacks.

Because the time frame for parent buy-in to the changes is unpredictable, it’s important to have a back-up plan in case a crisis occurs before help is in place. A typical crisis is when one of the parents has an acute medical problem requiring hospitalization. The back-up plan would include prior discussion with in-home or residential providers so that emergency respite care is available. It would also include a communication and document folder—including medication lists, drug allergies, emergency contacts and a daily schedule. The prior arrangements mean that efforts during a crisis can be focused on the needs of the crisis. This is opposed to trying to put together a care plan in the midst of the crisis.

The challenges for adult children are significant and it’s important not to face them alone. A support group, either in person or online through ALZConnected, can be valuable as it provides an opportunity to hear from those who have experienced similar situations.

The Helpline is available 24/7 at 800.272.3900 and is staffed by trained personnel that can respond to a wide range of issues and concerns. A Care Navigation appointment can be arranged either via conference call or in the Alzheimer’s Association office to provide additional support and assistance in developing and implementing a plan.

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A A dementia diagnosis does not necessarily mean that driving must stop at once. However, it does mean that at some point in the future, the person with dementia will no longer be able to drive safely.

Driving is a complex task that depends upon our sensory, physical, and cognitive abilities. As dementia progresses, all of these abilities are impaired.

Conversations about driving can be very challenging. We live in a world where driving and independence are practically synonymous. Having to give up driving means facing the losses that come with dementia and this can be difficult for everyone involved.

If the person with dementia is diagnosed early, he may be aware of his diagnosis and understand the impact it will eventually have on his ability to drive safely. Ideally, he should participate in conversations and decisions regarding driving. However, if he cannot or will not, caregivers must prepare for a time when he will not be able to drive, and intervene to keep him and others safe.

Assessing safety
Because individuals with dementia can lack self-awareness, it is critical that someone else assess driving ability. One way to do this is to observe the person with dementia while driving, either as a passenger or by following them. Some warning signs include:

  • Getting lost
  • Forgetting the destination during the trip
  • Failing to observe traffic signs
  • Making slow or poor decisions in traffic
  • Becoming angry or confused while driving
  • Hitting curbs
  • Confusing the brake and gas pedals
  • Multiple accidents or near misses

Having the discussion
Be sure to approach the topic with empathy. Also, appeal to the person’s sense of responsibility: no one wants to be responsible for harming others on the road. It may be helpful to reinforce medical diagnoses and directives; sometimes people will respond to a doctor as an authority figure when they won’t listen to their children or spouse. Some options for this include:

  • Illinois driver’s license renewal: road test required over age 75
  • Comprehensive driver evaluation. You can search for a diagnostic driving evaluation center at ourcommunity resource finder.
  • A “Do not Drive” prescription from a doctor
  • Physician report to Secretary of State

However, keep in mind that even loss of a driver’s license may not be enough to keep the person with dementia off the road if he still has access to a car and is determined to drive. He may not remember that he has been told by his doctor not to drive or that he has lost his license.

Alternate transportation

  • You will want to explore alternative transportation options. Some resources include:
  • Family/friends/neighbors/religious community: Coordinate withCare Team Calendar.
  • Volunteer driver:National Volunteer Caregiving Network
  • City or township programs such as paratransit or taxi vouchers for seniors or disabled persons.Click hereto access these via your local Area Agency on Aging or dial 1.800.252.8966

Deterring the Determined Driver
Sometimes you may need to actively prevent the person with dementia from driving. This can be very difficult. Children find it emotionally challenging to start exerting authority over their parents, and spouses don’t want to make their loved one angry by insisting they stop driving. However, no one wants the person with dementia to injure or kill themselves or someone else. Here are some ways to prevent an unsafe driver from getting on the road:

  • Distract and re-direct: “We’ll go visit your friend next week when they’re back from vacation. Can you come help me with”
  • Offer to drive: “It’s my turn to drive today.”
  • Restrict access to car keys.
  • Disable the car.
  • Remove or sell the car.

Giving up driving can be a significant loss. Conversations about driving are one of the difficult situations in dementia care, especially because the safest solution may not be the choice that makes an affected loved one happy. The Alzheimer’s Association 24/7 Helpline is here to talk you through this and provide support, resources and advice.

Learn more about dementia and driving,
including videos of four families having this discussion.

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A Caring for a loved one with dementia at home can be challenging. A person with dementias care needs change at different stages of the disease and each familys situation is unique.

Kristen Resendiz
Helpline Manager

It is normal for you to need some assistance from time to time or on a long-term basis. Taking a break from caregiving allows for a change in environment, time to relax, and/or time to engage in self-care.

Assistance with caring for your loved one in the home can be achieved through Adult Day Services, In-Home Care Services, and/or informal assistance from family members, friends, neighbors, or volunteers from the community. Using these services can support and strengthen your ability to be a caregiver.

Adult Day Services
Adult Day Services are provided outside of the home and are designed to meet the person with dementia’s needs, support his/her abilities and independence and provide the opportunity to interact with others. Adult Day Centers may provide a variety of services that can include: Counseling, Health Services, Nutrition, Personal Care, Activities, Behavior Management, Therapy, and Dementia Specific Services.

Adult Day Services are generally most appropriate for individuals in the early to middle stages of the disease however there are some programs that can work with individuals throughout their disease progression. Participating in Adult Day Services outside of the home give the person with dementia the opportunity to engage with other’s as well as the opportunity to get out of the house to participate in enjoyable activities in a safe and social environment.

In-Home Care Services
In-Home Care Services are provided inside of the home. In-Home Care can include: Companionship, Personal Care, Homemaking/Housekeeping, and Skilled Care Services. Each In-Home Care agency will work with you to ensure that your loved one’s care needs are met.

In-Home Care Services are ideal if leaving the home is an obstacle for the person with dementia. In-Home Care Agencies often have large service areas, especially in rural areas, so even if an agency is not located near the person with dementia they may still serve their area. In-Home Care Services allow the person with dementia the opportunity to receive services in a familiar environment and allow for care and interaction from someone other than the primary caregiver.

Informal Assistance
Again, every family situation is different, but sometimes a family member, close friend, neighbor, or volunteer is willing to occasionally help out. Take these people up on their offers and don’t feel guilty for asking for help. Sometimes people don’t know how they can help, so let them know!

Volunteer Caregiver Services may also be available in your community. This may be available through a faith-based organization, such as a local church, or though a Volunteer Caregiving Agency. For example, the National Volunteer Caregiving Network lists Volunteer Caregiving Organizations throughout the nation. Visit their website to see if there is a Volunteer Caregiving Agency that serves your loved one’s area.

If financing for these types of services is an issue and there are no informal volunteer services available to you check with each Adult Day Center or In-Home Care Agency to see if scholarships or sliding scale fees are available.

There may also be government assistance available to your loved one with dementia. For example, the Illinois Department on Aging offers a program called the Community Care Program which offers financial assistance to those who qualify for community based services such as Adult Day Care and In-Home Care. You can visit: state.il.us/aging or call the Illinois Department on Aging Senior Helpline at 800.252.8966 to learn more about this program.

Choosing an Adult Day Center or In-Home Care Agency can be overwhelming. The Alzheimer’s Association 24/7 Helpline (800.272.3900) is available to assist you in determining which type of care is best for your loved one and how to go about choosing a service that will best meet your loved one’s activity level and care needs. Our Helpline staff can provide referrals for Adult Day Centers and/or In-Home Care Agencies that serve your loved ones area. You can also learn more about and locate referrals for these services by visiting ourwebsite.

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Call the Helpline at 800.272.3900 with questions or concerns,
or fill out an E-Helpline Request for Assistance.


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Alzheimer's Association

Our vision is a world without Alzheimer's
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.