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Family Communication
Everyone needs to communicate. But Alzheimer's disease and other dementias disturb communication. As time passes, people with dementia develop problems saying what they think and feel.They also have more trouble understanding others.
You may notice many changes, including:
- trouble finding the right words
- using familiar words over and over
- inventing new words to describe things
- losing a train of thought
- having trouble putting words together
- speaking in a childhood language
- using curse words
- speaking less often
- using hand motions instead of speaking
If you're talking to a person with dementia, you can improve communication by:
- staying calm and supportive
- focusing on feelings, not facts
- paying attention to tone
- addressing the person by name
- talking to, not about, the person
- speaking slowly
- using short, simple words
- asking one question at a time
- being specific
- using gestures such as pointing
- avoiding arguments
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Communicating with Paid Help
Paid help can help you or your loved one stay home as long as possible. Different home care providers offer different services. So, ask what your care provider can and can't do. Here are some tips on working with a home care provider:
- Fully describe the person who needs care. In addition to health details, include personal history, habits, likes and dislikes, daily routine, and so on. For more ideas, see the Personal Facts and Insights form.
- List exactly what you want done before meeting with the care provider.
- Offer detailed step-by-step care instructions. For example, tell the home care provider whether to give a shower or bath, what kind of and how much bath gel to use, and that it's a good idea to offer the person a washcloth to hold.
- Give helpful feedback, and praise good work.
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Talking with the Doctor
See the doctor every six months, or immediately if a sudden change occurs. Close communication with the doctor will mean the best medical care for you and your family.
Assessment: At each visit, the doctor will note the patient's progress. Between visits, keep a list of questions, concerns, and changes in behavior and routine.
Treatment: The doctor may prescribe medication or other treatments. Keep track of how well things are working by noting what has improved, what has gotten worse, any medication side effects and any new problems that may need treatment.
Call the doctor right away if the person:
- becomes suddenly more confused
- has a major change in memory or mood
- has a blackout, faints or falls
- is suddenly unable to speak or move any part of the body
- develops a fever
- starts having accidents, including wetting the bed
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Working with Staff in a Nursing Home or Assisted Living Facility
As the disease progresses, the person's needs will change. You can help the staff meet a resident's changing needs by staying involved. In fact, your involvement can start even before a person is admitted to a long-term care facility.
Intake and admissions
An intake meeting happens before a person moves into assisted living or a nursing home. At this intake meeting, the treatment team can begin to learn about someone's personal history, cultural beliefs, needs, likes and dislikes.
When completed, Personal Facts and Insights can help staff get a better understanding of the person.
Assessment
An assessment happens before admission. Assessment is repeated at admission and regularly afterwards. An assessment takes the large view of a patient. The staff tries to understand as much as they can about a resident.
Care or service planning
Nursing homes and assisted living facilities make detailed plans for the care of each resident. In a nursing home, this is called a care plan. In an assisted living facility the document is known as a service plan.
Care conferences are held routinely, every few months. They may also be called on an as-needed basis. The agenda includes discussing a resident's health, medications and activities. The care conference is a good place to meet staff members, ask questions and raise concerns.
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Click here to learn how to be involved in the care plan.
Being Involved in the Care Plan
People with dementia and their family members have a right to be included in care conferences. If necessary, ask to be included via a conference call.
Before the meeting
- Ask that the meeting be held when you can come.
- Request a copy of the current care plan.
- List the questions, changes, concerns or goals you'd like discussed.
At the meeting
- Involve the resident as much as possible.
- Ask questions to make sure you understand everything.
- Take notes.
- Be sure you understand and agree with the care plan.
- Ask for a copy of the care plan.
Follow up
- Stay involved in care.
- Log any reactions to the care plan, medication or treatment.
- Communicate with the doctor or staff about the care plan.
- If the plan isn't working, ask for another care conference.
Resident council
A resident council is independently led by a group of residents who discuss concerns and arrange for activities. In nursing homes, staff members provide support to resident councils. Under the law, nursing home residents have the right to meet independently as a group. Assisted living facilities may offer other ways for residents to meet and discuss their care.
Family council
A family council is a group of family members and/or friends of residents who meet to discuss concerns and support the staff in efforts to improve care and to make life in the nursing home the best it can be. Staff members may or may not be involved in family councils. Under the law, families of nursing home residents have the right to meet independently as a group. An assisted living facility may have a family council or offer other means for families to discuss the facility's care.
Informal interaction
When you visit your loved one, greet staff members and chat with them. These unplanned meetings help build trust and a friendly approach to problem solving.
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Creating a Personal Health Record
A personal health record (PHR) is a regularly updated collection of important health information. If you have dementia or are caring for someone with dementia, a PHR will help you work with your care team.
What should a PHR include? 
- personal identification, including name, birth date and social security number
- people to contact in case of emergency
- names, addresses and phone numbers of your physician, dentist and other specialists
- health insurance information
- living wills and advance directives
- organ donor authorization
- a list and dates of significant illnesses and surgeries
- current medications and dosages
- immunizations and their dates
- allergies
- important events, dates and hereditary conditions in your family history
- results of a recent physical examination
- opinions of specialists
- important tests results
- eye and dental records
- correspondence with insurance provider(s)
- permission forms for release of information, operations and other medical procedures
- exercise regimen
- use of herbal medications
- record of mental health care or counseling
Source: American Health Information Management Association, 2005.
Personal Health Record Checklist
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