The National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers

The National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers is a two-day meeting of researchers, service providers, persons with dementia, family caregivers, and other stakeholder groups.

It will be held October 16-17, 2017, at the Natcher Building’s Ruth L. Kirschstein Auditorium of the NIH in Bethesda, Maryland. NIA’s Division of Behavioral and Social Research (NIA/DBSR) would like to encourage you to attend this Research Summit. The meeting is sponsored by the U.S. Department of Health and Human Services and the Foundation for the National Institutes of Health through private sector support.

In-person registration is now full. The wait list also has reached its capacity. If you would still like to participate in this meeting, you may register for the videocast option.  By registering, you will receive an email with videocast details approximately one week before the Summit. You can register here.

The Summit is intended to identify what we know now and what we still need to learn in order to accelerate the development, evaluation, translation, implementation, and scaling up of comprehensive care, services, and supports for persons with dementia, families, and other caregivers. The Summit is focused on research that is needed to improve quality of person-and family-centered care and outcomes across care settings, including quality of life and the lived experience of persons with dementia and their caregivers.

 

What to do when a person living with Alzheimer’s disease hides things

A person with Alzheimer’s disease may start rummaging or searching through cabinets, drawers, closets, the refrigerator, and other places where things are stored.

He or she also may hide items around the house. This behavior can be annoying or even dangerous for the person, caregiver, or family members.

Here are some tips to help cope with this behavior:

  • Keep the person with Alzheimer’s from going into unused rooms. This limits his or her rummaging through and hiding things.
  • Search the house to learn where the person often hides things. Once you find these places, check them often, out of sight of the person.
  • Keep all trash cans covered or out of sight. People with Alzheimer’s may not remember the purpose of the container and may rummage through it.
  • Check trash containers before you empty them, in case something has been hidden there or thrown away by accident.

Learn more about rummaging and hiding in Alzheimer’s disease.

10 Things Caregivers Can Do to Help Their Loved One with Dementia During a Hospital Stay

Caring for a loved one with dementia is a big job, but when a loved one with dementia is hospitalized, many new challenges appear.

By Natalie M. Bruck, BS.  (I am a Physician Assistant student at Rush University with anticipated graduation in December 2018.  I wrote this blog because I find that caregivers are an incredibly important part of the team to care for persons living with dementia.)

Caring for a loved one with dementia is a big job, but when a loved one with dementia is hospitalized, many new challenges appear. Research has shown that individuals with dementia who are hospitalized have an increased risk of developing complications during their hospital visit and tend to have longer hospital stays compared to patients without dementia. Fortunately, you, the caregiver, can do many things to improve a hospital stay for your loved one living with dementia.  Here are 10 things you can do:

1.) Come Prepared

For planned hospital stays, you should bring important medical information such as a list of medications and allergies, contact information for their health care providers and copies of advanced directives. This will allow for a smooth hospital stay and the health care team will have all the information they need to provide the best care. In addition to medical information, bringing changes of clothes, toiletries and familiar objects from home will allow for a more comfortable stay at the hospital.

While it may seem challenging, there are ways to prepare for an unexpected emergency room trip. It may be helpful to pack a bag with clothing, toiletries and important health information which can be kept in a closet at your home, but is ready to use if a loved one needs to go to the emergency room suddenly. Being prepared will allow you to grab a bag quickly and head to the hospital without worrying that you forgot something important.

2.)    Communication with Hospital Staff

Good communication with the hospital staff is important. You should be prepared to provide a description of your loved one’s medical condition and describe what is “normal” for them.  The care team then can identify any changes in your loved one’s condition that may indicate that something is wrong.

3.)    Bring Familiar Items from Home

Hospitals can be stressful and unfamiliar environments for patients with dementia. A family member or caregiver being present with the patient at all times can be comforting. Bringing items from home that are familiar to the patient such as a blanket, sweater, music or movies can make your loved one feel at ease and in an environment that is similar to their home.

4.)    Minimize Background Noise

Hospitals can be noisy places which can make patients with dementia feel agitated or anxious. Minimizing background noise during times of stress or agitation can be helpful. You can ask the nursing staff to lower the volume on any noisy machines and also keep the television at a low volume. You also can request a private room which can make it a quiet, more familiar environment for your loved one.

5.)    Organize a Team

When a loved one is in the hospital, gather your family and friends in order to create a  support team. A team can limit stress on the patient, family and friends. Having one person in charge of sending updates to family members on the person with dementia’s condition. Make sure that family members look out for one another and no one is feeling overwhelmed.

6.)    Talk to a Health Care Provider Immediately if Something Changes

While health care providers know which medical treatments are the best for their patients, no one knows your loved one better than you. Because you know him or her the best, help health care providers by letting them know about any changes that are not typical for your loved one. Changes can often be normal, but in many cases can be a sign of something more serious.

7.)    Avoid Longer Stays and Unnecessary Treatments

If your loved one is scheduled for surgery, ask their health care provider what you can do to shorten their hospital stay. Sometimes, you may be able to have separate appointments before their surgery which can shorten the amount of time they spend in the hospital. For patients with dementia, make their stay as short as possible to prevent complications and get them back to their normal routine. Also, be sure to ask their healthcare provider about anesthesia and what procedures are being done. Knowing what health care activities are taking place will help you look out for any side effects, changes or complications.

8.)    Be Aware of “Elderspeak”

Many caregivers, both family members and hospital staff, may talk in elderspeak. Elderspeak is language that uses simple vocabulary, changes in tone, changes in pitch and inappropriate terms of endearment. While many people may think that calling patients, “honey,” or, “sweetie,” could be comforting, the patient may feel upset, annoyed or looked down upon. Elderspeak can be upsetting for patients and may make them agitated and angry. If you encounter family members, friends or staff using elderspeak, don’t be afraid to speak up for your loved one.

9.)    Remember to Take Care of Yourself

Being in the hospital can be stressful. As your loved one’s caregiver, you need to take care of yourself. Remember to take frequent breaks and don’t be afraid to ask for help when you need it. Having other family members visit is helpful.  Taking shifts also can ease some of the stress.

10.)  Know Appropriate Follow Up Care

When your loved one is released from the hospital, make sure you and the care team have scheduled follow up appointments and tests. Make sure you are comfortable with this plan, and bring up any questions or concerns you may have regarding your loved one’s care.

Hospital stays for anyone can be quite stressful, and when an individual with dementia is hospitalized it adds a level of complexity which can lead to medical complications. Fortunately, caregivers and family members can do several things to make their loved one’s hospital stay easier, more enjoyable and safer for everyone.

Sources

[1] Bail K., Goss J., Draper B., Berry H., Karmel R., Gibson D. The cost of hospital-acquired complications for older people with and without dementia; a retrospective cohort study. BMC Health Services Research. 2015; 15:91.

[2] Fick D., Foreman M. Consequences of not recognizing delirium superimposed on dementia in hospitalized elderly individuals. Journal of Gerontol Nurs. 2000 Jan;26(1):30-40.

[3] Going to the Hospital: Tips for Dementia Caregivers. National Institute of Aging. 2017. https://www.nia.nih.gov/health/going-hospital-tips-dementia-caregivers

[4] Williams KN., Herman R., Gajewski B., Wilson K. Elderspeak Communication: Impact on Dementia Care. American Journal of Alzheimer’s Disease & Other Dementias. 2008; 24. 11-20.

 

Training Curriculum: Alzheimer’s Disease and Related Dementias

Currently, more than five million Americans live with Alzheimer’s disease. Training for the primary care workforce about dementia, and caring for those affected, is essential.

With federal partners and public stakeholders, the Health Resources and Services Administration created a curriculum—16 core modules and four supplemental modules—for health educators to train the primary care workforce about dementia care, and to help providers address caregiver needs.

To promote interprofessional teamwork in the care of persons living with dementia, this curriculum may be used by:

  • Health professions faculty
  • Students
  • Primary care practitioners
  • Members of the interprofessional geriatrics care team
  • Direct service workers

Modules 1-12 contain information about Alzheimer’s disease and related dementias of particular interest to the primary care workforce. Modules 13-16 specify the roles of specific health care professions in dementia care.  All 16 core modules include a PowerPoint presentation, with detailed notes, and a reference list, to assist with teaching and presentations.

The modules focus primarily on outpatient rather than residential care because the majority of persons living with dementia remain in their homes during the earlier, and some even through later stages, of dementia.

The curriculum modules can be accessed here.

Module List

Module 1: Overview of Mild Cognitive Impairment and Dementia for an Interprofessional Team
Module 2: Diagnosing Dementia
Module 3: Recognizing the Role of Diversity in Dementia Care   
Module 4: Providing and Discussing a Dementia Diagnosis
Module 5: Understanding Early-Stage Dementia for an Interprofessional Team
Module 6: Understanding the Middle Stage of Dementia for the Interprofessional Team
Module 7: Management of Common Medical Conditions Observed During Middle and Late Stages of Dementia
Module 8: Medical Treatments of Dementia
Module 9: Interprofessional Team Roles and Responsibilities
Module 10: Effective Care Transitions to and from Acute Care Hospitals
Module 11: Ethics and Capacity Issues
Module 12: Palliative and End-of-Life Care for Persons Living with Dementia
Module 13: Clinical Social Workers and Clinical Psychologists: Practicing with Persons Living with Dementia and their Care Partners 
Module 14: The Role of Acute Care Staff in Emergency Departments (EDs) and Hospitals for Persons Living with Dementia
Module 15: Role of the Pharmacist in the Management of Persons living with dementia
Module 16: Dentistry and Dementia

Minimize danger around the house—tips for caregivers

People with Alzheimer’s disease may not see, smell, touch, hear and/or taste things as they used to. Make life safer around the house by:

  • Checking foods in the refrigerator often. Throw out anything that has gone bad.
  • Put away or lock up things like toothpaste, lotions, shampoos, rubbing alcohol, soap, or perfume. They may look and smell like food to a person with Alzheimer’s.
  • If the person wears a hearing aid, check the batteries and settings often.

Remember to re-evaluate the safety of the person’s home as behavior and abilities change.

Learn more about home safety for people with Alzheimer’s.

Alzheimer’s research—what you can do to help

“When I was diagnosed with Alzheimer’s disease, I wanted to do everything possible to fight the disease, not give in to it. I talked with my doctor about possible treatments. He helped me find a clinical trial that was right for me. Now I get to talk with Alzheimer’s experts. Plus, I know I’m doing something that might help my children and grandchildren avoid the disease.”

This is an exciting time for Alzheimer’s and dementia research. Advances are being made because thousands of people have participated in clinical trials and studies to learn more about the disease and test treatments.

You can help. Check out Participating in Alzheimer’s Research: For Yourself and Future Generations to learn about:

  • Types of clinical research
  • Common questions about participating in research
  • Why placebos are important

Why studies need all kinds of people

Make communication easier for a person with Alzheimer’s disease

Check out these 5 tips to make communication easier between you and a person with Alzheimer’s:

  • Make eye contact and call the person by name
  • Be aware of your tone, how loud your voice is, how you look at the person, and your body language
  • Encourage two-way conversation for as long as possible
  • Use other methods besides speaking, such as gentle touching
  • Try distracting the person if communication creates problems

Visit the ADEAR website to learn more about the changes in communication that may accompany Alzheimer’s disease.