Family Needs and Long Term Care

October 17, 2005

Ann Riesenberg, Program Director, Alzheimer Association

Issues in Locating a Long Term Care Facility for a Family Member:

• Look before it is necessary
• Obtain guidelines
• Get information from Aging Resources of Central Iowa
• Check the reputation with the Department of Inspections and Appeals

Looking for a long-term care solution becomes necessary when:

1) person becomes overwhelmingly incontinent

2) person is not sleeping at night

3) fear of wandering

4) person experiences eating and swallowing problems and weight loss

5) family care giver too exhausted

Caregivers at home work more than 100 hours a week on the average caring for the person with Alzheimer’s Disease. That is the equivalent of 2½ full time jobs if the family is not using respite services or adult day care services.

It is important for the caregiver identify ahead of time what even will precipitate the transition to long term care, and to draw a line in the sand and say, “When this particular event happens, that is when I will know it is time to move my loved one to a long term care facility.” And then it is important to honor that line in the sand.

Obtain Guidelines

Look at the regulations for the facility you are considering to make sure it is the type of care your loved one needs.

There are various levels of care available at different types of facilities. It is important to choose the right one.

• Assisted Living: Room and board provided and a little help with other things. Person is essentially independent.
• Chronic Confusion and Dementia (CCDI): specialize in care of persons with Alzheimer’s and other related dementia. Offer help with activities of daily living (ADL’s)
• Nursing Care: nursing home type care, total care, help with everything
• Continuous Care Retirement Communities (CCRC): Provides multiple levels of care, person can move from one level to another without moving away from the facility.

When evaluating various facilities for placement of your loved one, never go alone. Take someone with you. There are several questions you should ask and things you should look for:

• Ask to see their philosophy, and that the philosophy assures that each resident will be treated with dignity
• Ask for admissions and discharge policies. What are the conditions for my parent or spouse to be admitted here; what would cause him/her to be discharged from here?
• How long will the facility hold a bed if my loved one has to be hospitalized?
• What kind of care is offered?
• What kind of late stage care do you provide?
• What is their problem resolution procedure? (Typically, it is first to the charge nurse, then director of nursing, then administrator, then family advocacy group, then Department of Elder Affairs’ Ombudsman)
• Is there a support group?
• Ask to see a copy of their most recent survey results and pay attention to what kinds of problems or concerns were identified
• How is the care plan or service plan determined (this is what dictates meds, diet, activities, and so forth)
• How do they address changes in condition, how to they communicate those changes, how do they handle those changes?
• Look for residents that are smiling
• Look for residents that are being allowed to make reasonable choices
• Watch that the staff is treating residents as unique individuals
• Notice that staff are talking with families and families with staff
• Notice that staff are talking with residents at their eye level
• Ask how they address certain behaviors / difficult behaviors
• Notice if the facility seems pleasant, homey rather than institutional
• Ask to see resident rooms. Are they cheerful, is there a place for personal belongings, a dresser, private closet space?
• Notice the presence of odors
• Pay attention to the bathrooms. Are they private or communal, are there safety features in place?
• Does the staff encourage people to do for themselves to the best of their ability? Best practices says staff should do with, not do for.
• Ask for a copy of typical week/month menus.
• Activities should be active: There are three types of activities that should be included every day for every person:

1) leisure activities: such as sing-alongs, bingo, reading aloud, current events discussions, crafts, etc.

2) self-grooming: hand manicure care, polish shoes, etc.

3) activities of productivity: occupationally related, tasks such as folding towels, washing silverware, folding bulletins, preparing mailings, etc.

• Ask about staff qualifications and training. How does the staff get trained? Is the training specific for persons with Alzheimer’s Disease?
• How many people are on duty at a time: day shift, evening shift, night shift, weekends, holidays?
• Is the activity program scheduled for weekends, too?
• What is the typical staff to resident ratio?
• Notice the environment:

1) Is there a way for the person to go outside and enjoy nature?

2) Is there opportunity for exercise?

3) Is it a safe and secure environment?

4) How to they manage wandering, door lurkers, “escapees”?

5) Are they involved in the Safe Return program

6) Is there evidence of cues to help people figure out what the room is for? (i.e. pictures of toilet on bathroom door, picture of bed on bedroom door)

7) Is there room for personal belongings?

The process of moving a family member into a care facility will be very difficult for you and for your family member. There are ways that you can help ease the transition for your loved one into a long term care facility:

• They will be aware that they are being moved.
• Do tell them ahead of time, but maybe only one or two days before the event.
• Make the facility room look as much like home as possible. Take detailed pictures of what the bedroom / living room of home look like, then move things lock stock and barrel as much as possible, and set it up so it looks the same.
• Have the person help pack a small box of mementos they wish to keep with them.
• Take the person to a long leisurely lunch. While you are at lunch, have another family member or friend move the possessions and set up the new room. Then go to the facility after lunch, and tell them this is home now.
• Expect anger and tears.
• Do not display an attitude of remorse or guilt
• Prepare a bullet card and a life story book ahead of time, and give these to the staff to help with transition.

Bullet Card:

This is a 5x8 note card that tell some important information about your family member. It will be used to help the staff make the person more comfortable. Example: My mother’s name is Harriett, but everyone calls her Twisty. She likes a cup of coffee first thing in the morning, with 2 sugars and a tablespoon of cream. List the names of significant people in her life: parents, siblings, spouse, children. Identify if they are living or dead, and a couple of key facts about them. She likes these things……, these are key activities in her past…..

Life Story Book:

This is a picture book telling the person’s life story. Most of is should be about their early life, the old memories such as pictures of their siblings, favorite car, place where they worked, parents, spouse at the time of their marriage, so forth. Every picture should have a caption and short paragraph telling the story about its significance. The immediate time period, current pictures of family members, should be a very small part of the book. This will give the person something to talk about and show to their caregivers.

Important web site for getting information about survey results of care facilities:

https://dia-hfd.iowa.gov/DIA_HFD/CTLEntityViewReportCard.do