We Have MOVED!

 

Dear blog readers,

Caregiver 2.0 is merging with the Alzheimer’s Association – Greater Michigan Chapter’s sister blog “Alzheimer’s Activities”. The blog will contain helpful tips and ideas for engaging a person with dementia in activities, as well as caregiving strategies and news. Come visit us at the new website (http://alzheimersactivities.wordpress.com/).

Thanks and hope to see you there!

Tips for Managing Dental Hygiene

Dental care can be a challenge for individuals with Alzheimer’s because of their inability to understand the purpose of brushing teeth or to accept help from others.

Tips for helping the person with dementia manage dental care:

• Provide short, simple instructions: “hold your toothbrush,” “put paste on the brush,” and “brush your top teeth,”etc.
• Use a mirroring technique — hold tooth brush and show person how to brush his/her teeth or brush your teeth at the same time
• Brush teeth or dentures after each meal and floss daily
• Remove and clean dentures every night
• Brush person’s gums, tongue and roof of mouth
• If person refuses to open his/her mouth, try using oral hygiene aids available from the dentist to prop the mouth open
• Strained facial expressions during dinner or refusal to eat may indicate oral discomfort
• If you notice dental or gum problems, take the person to the dentist
• Notify the dentist in advance that person has Alzheimer’s so that an oral care routine can be developed

 

Home Safety and Alzheimer’s Disease

 

When caring for an individual with Alzheimer’s disease at home, safety is an important concern. People living with Alzheimer’s can remain in their homes safely for a longer period of time if safety issues are addressed. Safety issues evolve as the disease progresses, so be sure to reevaluate safety periodically.

Tips for Home Safety

Accommodate for Visual Changes

• Use contrasting colors on walls, trim and floors to help the person anticipate staircases and room entrances. This technique is also effective in the bathroom, where a white toilet and sink may be hard to see against a white floor and wall
• Changes in levels of light can be disorienting. Try to maintain consistency in lighting the home and keep it well-lit
• Add extra lighting in entries, areas between rooms, stairways and bathrooms
• Diffuse glare by removing mirrors and glass-top furniture
• Cover windows with blinds, shades, or sheer draperies as needed to control and diffuse the light
• Use night lights

Avoid Injury during Daily Activities

• Lower the temperature of tap water and monitor food temperatures if possible, to prevent the person from accidentally getting burned
• Install walk-in showers, grab bars and non-skid decals on slippery surfaces
• Provide the appropriate level of support to the person when taking prescription and over-the-counter medications

Beware of Hazardous Objects and Substances

• Remove guns and ammunition from the home. Until guns and ammunition can be removed safely, lock them in a spot where the person with Alzheimer’s cannot access them. Never store weapons loaded.
• Limit the use of mixers, grills, knives, and lawnmowers
• Lock up hazardous materials that could be ingested
• Supervise smoking and alcohol consumption, and limit or eliminate their use when possible
• Move items that might cause a person to trip, such as unsecured throw rugs, floor lamps and coffee tables to create unrestricted areas for movement
• Clean out the refrigerator regularly, and discard expired food

Prepare for Emergencies

• Keep a list of emergency phone numbers and addresses by every phone, as well as a list of all prescriptions and dosages
• Regularly check fire extinguishers and smoke alarms
• Enroll the individual and caregivers in the Medic Alert + Safe Return program prior to any wandering incident. This helps protect the person with dementia, as well as ensuring that he or she will get needed care if something happens to a caregiver
• Consider using Comfort Zone to monitor the person’s whereabouts. Caregivers or other family or friends can receive computerized alerts when the person with Alzheimer’s wanders out of a pre-set range, or can be checked in on throughout the day
• As the disease progresses into the middle and late stages, take these steps to make dangerous places less accessible:
  • Lock or disguise hazardous areas
  • Install door locks out of sight, but only keep locked in this way when someone is home to help in case of an emergency
  • Use safety devices, such as childproof locks and door knobs, or hide door knobs with a cloth or painted mural

Planning for Hospital Stay and Discharge

A planned hospitalization or unexpected health emergency can occur at any point during the disease progression and may or may not be the result of Alzheimer’s or another dementia.

A hospital visit or overnight stay can cause anxiety or discomfort for the person with the disease. The change from home to an unfamiliar environment and the added stress caused by medical interventions may lead to increased confusion or disorientation. Knowing what to expect during a hospital visit can help make the experience more comfortable for everyone.

Plan ahead

In the early stages of the disease, the person with dementia is able to make decisions on his or her own behalf and should be included in all conversations about medical care. It is important to address wishes for health care, including emergency medical treatment, as early as possible so that family and care team members can confidently implement the plan in the event the person is no longer able.

As the disease progresses, it will become increasingly difficult for the person with dementia to understand the purpose of hospital visits and medical intervention, and he or she will be unable to participate in the health care planning process. The care partner or a member of the care team should always be present to explain the reason for the hospital visit or medical intervention as much as possible and provide support and act as an advocate on their behalf.

Consider the following:

Prepare an emergency kit with legal paperwork and current medical information. This information should be available in an easily accessible place such as in an envelope attached to the refrigerator. Some items include:

• A list of current medications and allergies
• Copies of legal papers (e.g. living will, advance directives, power of attorney)
• Insurance information
• Name and phone number of physician
• Names and phone numbers of emergency contact and additional care team members
• Request for brain autopsy or organ donation
• A physician’s note confirming the diagnosis

Review current legal documents stating preferences for health care, including life-sustaining treatment. The following documents may help prevent an emergency decision from taking place and provide assurance that the wishes of the person with the disease are upheld.

• Power of Attorney for Health Care: Names a health care agent to make health care decisions on behalf of the person with dementia when they are unable.
• Living Will: A type of advance directive that includes preferences for medical treatment, including life-prolonging treatments.
• Medical Release of Information: Ensures that a doctor can share information with the person’s family member or friend. This can be beneficial to those who are helping coordinate care.
• Hospital Visitation Form: For those in a domestic partnership, hospitals in some states may enforce strict visitation laws and/or require special forms if relationship is not legally recognized in that state.
• Do Not Resuscitate (DNR): A physician order to prevent any attempts at revival, particularly if CPR or defibrillation is needed.  Without it, medical professionals are required to perform resuscitation.

Prior to hospitalization

• Share information regarding the diagnosis, other medical conditions or allergies with the entire medical team.
• Provide information about personal habits, dietary preferences or any environmental needs like a private room that would make the experience more comfortable.

Ask questions

• Which procedures will be performed and how? What are the risks and benefits, expected results and expected length of recovery?
• Is assessment or treatment available at an outpatient clinic?
• How long is hospitalization required?
• If anesthesia is used, how will this affect cognition?
• What are the visiting hours? Are extended hours available?

Hospital discharge planning

At the end of a hospital stay, health care providers will make recommendations for long-term care needs and recovery following hospitalization. A member of social services or a discharge planner may also be involved if the care plan calls for in-home services, referrals to rehabilitation facilities or outpatient services. Post-operational or discharge orders may involve several components including new medication, therapy, wound care or monitoring.

The following questions may help the individual and their car team to prepare for discharge:

• Which activities may require more assistance after discharge?
• When is it safe to engage in physical activity?
• What is the safest way to manage pain?
• Have medications changed and how often should they be administered? Which signs or symptoms are causes for concern? Who should be contacted?
• Is a follow-up visit necessary? When will this occur?

10 Ways to Help a Family Living with Alzheimer’s

1. Stay in touch — show you care. A card, a call or a visit all mean a lot.
2. Treat the person with respect and dignity. Focus on all that the person with dementia can do.
3. Do the little things. Drop off dinner or run an errand.
4. Be specific when offering help. Tackle a task on the family’s to-do list.
5. Educate yourself about Alzheimer’s. Learn about its effects and how to respond.
6. Include everyone in activities. Plan a picnic or dinner at your place; include the person with the disease whenever possible.
7. Be a good listener. Support and accept — try not to judge.
8. Encourage a healthy lifestyle. Suggest practical tips to exercise and eat right.
9. Allow the family some personal time. Fill in as a caregiver, when needed.
10. Keep all family members in mind. From tots to elders, each person reacts uniquely.

 

Caregiver Grief, Mourning, and Guilt

It’s normal to feel loss when someone you care about has Alzheimer’s disease. It’s also normal to feel guilty, abandoned, and angry. It’s important to acknowledge these emotions and know that you may start to experience them as soon as you learn of the diagnosis.

Alzheimer’s gradually changes the way you relate to the person you know and love. As this happens, you’ll mourn him or her and may experience the stages of grieving: denial, anger, guilt, sadness, and acceptance. These stages of grief don’t happen neatly in order. You’ll move in and out of different stages as time goes on. Some common experiences in the grieving process include:

Denial

• Hoping that the person is not ill
• Expecting the person will get better
• Convincing yourself that the person hasn’t changed
• Attempting to normalize problematic behaviors

Anger

• Frustration with the person
• Resenting the demands of caregiving
• Resenting family members who can’t or won’t help provide care
• Feeling abandoned

Guilt

• Wondering if you did something to cause the illness
• Feeling bad because you’re still able to enjoy life
• Feeling that you’ve failed if, for example, you can’t care for the person with dementia at home
• Having negative thoughts about the person, wishing that he or she would go away or even wishing that he or she would die
• Regretting things about your relationship before the diagnosis
• Having unrealistic expectations of yourself, with thoughts like: ‘I should have done…” “I must do everything for him or her’ or “I must visit him or her every day.”

Sadness

• Feeling overwhelmed by loss
• Crying frequently
• Withdrawing from social activities or needing to connect more frequently with others
• Withholding your emotions or displaying them more openly than usual

Acceptance

• Learning to live in the moment
• Finding personal meaning in caring for someone who is terminally ill
• Understanding how the grieving process affects your life
• Appreciating the personal growth that comes from surviving loss
• Finding your sense of humor

It’s important to take care of yourself during this time.

Face your feelings

• Think about all of your feelings — positive as well as negative
• Let yourself be as sad as you want
• Accept feelings of guilt — they’re perfectly normal
• Work through your anger and frustration
• Prepare to experience feelings of loss more than once as the person with dementia changes
• Claim the grieving process as your own. No two people experience grief the same way. Some people need more time to grieve than others. Some realize their feelings right away, while others may not grieve until caregiving has ended. Your experience will depend on the severity and duration of the person’s illness, on your own history of loss and on the nature of your relationship with the person who has Alzheimer’s.
• Know that it’s common to feel conflicting emotions, such as love and anger, at the same time
• Consider writing in a journal as a way to help you express your feelings.

Accept yourself

• Think about what you expected from yourself. Are your expectations realistic?
• Ask yourself whether your feelings of guilt are justified and whether you can do something differently to change them.
• Accept things that are beyond your control.
• Make responsible decisions about the things you can control.
• Think about the fond memories you have of the person.
• Allow yourself to feel good.
• As time permits, get involved or stay involved in activities that you enjoy.
• Turn to spiritual beliefs, if you choose, for consolation.

Get support

• Talk with someone you trust about your grief, guilt and anger — a counselor, pastor, family member or friend.
• Connect with other caregivers, family members and friends affected by Alzheimer’s.
• When you talk with other caregivers, share your emotions. Cry and laugh together. Don’t limit conversations to caregiving tips.
• Know that some people may not understand your grief. Most people think grief happens when someone dies. They may not know that it’s possible to grieve deeply for someone who is still alive but terminally ill.
• Get support from others in similar situations by attending a support group or joining ALZConnected.

2013-2014 Alzheimer’s Disease Progress Report: Insights and Challenges

 

Watch this video to learn more about what researchers are doing on a global level to help win the fight against Alzheimer’s disease. Check out the full 2013-2014 Alzheimer’s Disease Progress Report here.

Broncos owner Pat Bowlen steps down to deal with Alzheimer’s disease

http://www.usatoday.com/story/sports/nfl/broncos/2014/07/23/pat-bowlen-denver-broncos-owner-joe-ellis/13032671/

Clinical Trials for Alzheimer’s Research

Scientists have made enormous strides in understanding how Alzheimer’s disease affects the brain. Many of these insights point toward new therapies and improved ways to diagnose the disease and monitor its progression.

At any given time, dozens of studies are recruiting participants to help explore these exciting new approaches. Every clinical study contributes valuable knowledge, regardless of whether the experimental strategy works as hoped.

Without study participants, however, progress is stalled, and scientists report growing difficulty finding enough volunteers to complete these studies.

If you or a friend or family member has Alzheimer’s or another dementia — or even if you don’t — you can help advance knowledge about this illness. By participating in a clinical study, you can help new treatments, preventive strategies and diagnostic tools to become a reality.

What is a clinical study?

A clinical study is any medical research project involving human volunteers. Research into improved approaches usually begins with laboratory work or animal studies. Following early success with these methods, new strategies must demonstrate their effectiveness in the final proving ground of human testing.

What is a clinical trial?

A clinical trial is a specific type of study in which one group of volunteers gets an experimental treatment, while a similar group gets a placebo ( a look-alike “sugar pill”). Scientists evaluate the effect of the new treatment by comparing outcomes in the two groups.

Phases of clinical trials

The U.S. Food and Drug Administration (FDA), which regulates medical products and drugs, oversees a rigorous process for testing experimental treatments that is based on sequential phases. The treatments must perform well enough in each phase to progress to the next one. If a treatment performs adequately in all stages through Phase III, the FDA reviews the data and determines  whether to approve the drug for use in general medical practice.

• Phase 1 trials, the first stage of human testing, typically enroll fewer than 100 volunteers. These studies are primarily concerned with assessing the safety of a drug and whether it has risks or side effects.
• Phase II trials enroll up to a few hundred volunteers with the condition the drug is designed to treat. These studies provide further information about the safety of the drug and focus on determining the best dosage. Scientists also watch for signs of effectiveness, but Phase II trials are generally too small to provide clear evidence about benefit.
• Phase III trials may enroll several hundred to thousands of volunteers, often at multiple study sites nationwide or internationally. Phase III trials provide the chief evidence for safety and effectiveness that the FDA will consider when deciding whether to approve a new drug.
• Phase IV trials, also called post-marketing studies, are often required by the FDA after a drug is approved. The trial sponsor must monitor the health of individuals taking the drug to gain further insight into its long-term safety effectiveness and the best way to use it.

How to find a study near you

Alzheimer’s Association TrialMatch is a clinical studies matching service. TrialMatch uses information about your diagnosis, location and preferences to match a person with current clinical studies. Finding the right trial can be done over the phone or online. Once a match is found, and with your permission, a TrialMatch specialist will contact you to answer questions.

If you would like to consider participating in a clinical study, call 1-800-272-3900 or visit alz.org/trialmatch. More information about clinical studies can also be found at clinicaltrials.gov.

What is an Adult Day Program?

Do you know what an adult day program is, and are you aware of the plethora of services their patrons can benefit from? Adult day programs are one of the most underutilized community resources, and yet, they provide valuable socialization and intellectual stimulation for the person with dementia. Exercise, meals, or even transportation to and from the program, are among some of the services that may be available. Perhaps most importantly, day programs offer much needed respite for the primary caregiver.

Want to learn more? Read below.

What are Adult Day Programs/Centers?

Adult day centers (a.k.a. adult day programs, adult daycare) offer group respite care that is provided outside the home and designed to meet the individual needs of the participants and to support strengths, abilities, and independence. Throughout the day, participants have the opportunity to interact with others while being part of a secure, structured environment. Daily activities  may include music, recreation, discussion, and support groups. Hours of service vary, but centers are often open 7-10 hours per day, 5-6 days per week. Transportation may be available. Adult day centers also give caregivers a break from caregiving. While the person with dementia is at a center, the caregiver will have time to rest, run errands, or finish other tasks. As a result, he or she may return to caregiving responsibilities feeling refreshed and renewed.

Getting Started

Adult day centers can vary. Consult a variety of sources to find a center that is suitable for your individual. Plan a visit to observe and ask questions. While visiting, notice if individuals are engaged in activities and if staff members treat each person as an individual with unique needs. Keep an open mind. You may want to visit without the person with dementia, then visit together for lunch or an activity.

But…what if my person does not want to go?

Know that initial resistance is not uncommon, but these feelings are often overcome through repeated exposure and positive experiences. It is sometimes helpful for caregivers to refer to the day program as going to school, work, a senior center, visiting with friends, etc., in order to encourage participation. Reassure the person if they express anxiety and reinforce the pleasant interactions/activities that await them at the day center. Consider using a center’s services at least twice a week for a month before making a final decision. If the adult day center does not seem to be working out, consider reintroducing it again after some time.

Questions to Ask

When choosing an adult day center, there are a number of factors to consider, including the staff, environment, programs and type of services available. The following list of questions may be helpful when checking out a day center:

Center clients

• Does the center provide services for people with different types of impairments as well as those in good physical health?
• Does the center provide specific services for individuals with dementia?

Assessment

• Will the center evaluate the person’s needs, interests and abilities?
• How will this evaluation be accomplished and how often will it be repeated?
• Will medical needs, social and family history, cognitive functioning and social skills be assessed?

Programs and Services

Be sure the center offers the programs and services that you and the person with dementia need. The following are some of the specific services you may want to investigate. Keep in mind that few adult day programs offer all the services described below, and not all of the services are necessary for a program to be of high quality.

Activities

• Does the center offer activities that the person can participate in and enjoy?
• Are people with dementia separate from other participants or included in general activities?
• Are participants involved in suggesting activities?
• Is the schedule flexible and based on needs and interests?

Personal care

• Will the center’s staff help with grooming, toileting, eating, showering and other personal care tasks?

Nutrition

• Does the center provide nutritious meals and snacks? You may want to sample a meal.
• Can the center accommodate special diets or provide a culturally specific menu?

Health Services

• Will the center provide blood pressure checks and physical, dental, foot, eye and ear examinations?
• Will the center dispense medication and/or offer medication reminders?

Therapy

• Will the center help arrange physical, occupational, or speech therapy?
• Are there therapists onsite or on call?

Counseling

• Will the center provide support for clients and families? For example, can they offer guidance on outside resources and arrange for supportive care in the home?

Special Needs

• Is the center equipped to deal with someone who uses a wheelchair, is hearing or visually impaired or is handicapped in another way?

Operations

• Who is the owner or sponsoring agency?
• How many years have they been in operation?
• Does the center have a license, certification or accreditation (is appropriate in that state)?
• What are the hours of operation?
• Is there a minimum number of hours required?
• What are the policies regarding lateness or absence?

Cost

• What is the daily cost?
• What types of payments (e.g. Medicaid, long-term care insurance, military veteran’s benefits) are accepted?
• Is there financial aid or a sliding scale rate — where caregivers pay according to ability or income?
• Are there any additional charges for specific services?

Location and transportation

• Is the center easy for you to get to?
• Does the center offer its own transportation services?
• Does the center recommend specific transportation providers?

Facility

• What is the overall appearance and quality of the facility?
• Is it warm, inviting and free of clutter?
• Is there adequate space to accommodate activities for individuals with different needs?
• Is there space available for outdoor activities?
• Is the furniture clean and comfortable?
• Are there secured areas for outside walking?

Staff

• What are the staff qualifications?
• What is the staff to client ratio?
• Do staff members have dementia-specific training?
• Are individuals with dementia treated with respect and dignity?
• Does the center have a physician, nurse, or health care professional on staff or on call?
• If the center uses volunteers, are they adequately trained and supervised?
• Is staff warm and friendly to individuals, family members and caregivers?

It is also important to reevaluate your need for adult day services. At some point the person with dementia may need more care than the center can provide. Center staff and support groups can help evaluate your needs for future care.

Want to learn EVEN MORE and explore adult day programs that are nearby you? Call our 24/7 Harry L. Nelson Helpline at 1-800-272-3900, day or night!