Transitioning Care

Making the decision to move a loved one with dementia into a supervised care environment may be one of the most difficult choices that families face. Most caregivers consider a move only when their loved one's needs have exhausted their own abilities to continue to provide help. However, persons with dementia reach a point in their functional abilities when out-of-home placement may offer them a safer environment. Care homes often establish a consistent, predictable schedule that may provide comfort. It is important for families to recognize when it is in everyone's best interest to explore alternatives.

Time to Start Thinking About Moving Your Loved One Who Lives Alone

Here are a few signs that it may be time to start thinking about moving your loved one to a care home:

  • Poor personal hygiene and/or soiled clothes.
  • Poor driving skills, accidents.
  • Memory loss and/or personality changes.
  • Loss of appetite/not remembering to eat.
  • Spoiled food in the refrigerator.
  • Problems with bill paying, home maintenance, cleaning and other household tasks.

Time to Plan the Move

These are signs that your loved one may need an immediate change to safer living arrangements:

  • Wandering from home despite changes the caregiver has made to prevent wandering.
  • Frequent medication mistakes.
  • Lack of adequate food and/or fluid.
  • An unsafe/unclean home environment (not taking garbage out, dirty dishes).
  • Unsafe behavior (leaving stove on, exterior doors open at night).
  • Physical abuse of spouse or other in-home caregiver.
  • Need for night-time supervision that cannot be met by in-home caregiver.

When arrangements for a move are in place, and the person with dementia is unable or unwilling to agree, consider scheduling a family meeting without the person with dementia. The meeting is the time to decide what to do and work towards unanimous agreement with the plan.

Choosing a Care Home

Once the decision is made, start planning details of the move. Begin the process of choosing a care home. There are many care facilities. Simplify your decision-making by following the process outlined below.

I. NARROW DOWN YOUR OPTIONS AND CREATE A "SHORT LIST"


Understanding the Different Types of Facilities


Skilled Nursing Facilities

Skilled nursing facilities (also called nursing homes) are staffed with registered nurses who help provide 24-hour care in facilities that usually house more than 100 residents. Skilled medical care is available, such as wound care, management of medications and physical therapy. Personal care is provided for activities of daily living, such as eating, bathing and dressing.

Dementia Units

Some skilled nursing facilities have dementia units (also called locked, wandering or memory units). These units generally offer medical, personal, and activity-based programs that are specialized for dementia patients.

Assisted Living Centers and Homes

Assisted living centers serve as a bridge between independent living and nursing homes. They help people live as independently as possible by providing housing, support services, and uncomplicated health care as needed. These facilities are often for-profit, and can be any number of beds over 10, but are usually 30-100 or more. Assisted living homes are usually run by a single owner, have 10 beds or less, and are sometimes known as group homes.

Contact Other Resources


Alzheimer's Association

Call the Alzheimer's Association 24 hour help-line at 800-272-3900. You can get online assistance at www.alzdsw.org.

Area Agency on Aging

The Area Agency on Aging can supply a list of nursing homes and contact information through the Ombudsman program. These advocates will also address nutrition, care planning, financial issues or disputes, patient rights, privacy and confidentiality matters, visitation rights, or issues related to discharge or transfer. Ombudsman services are free. For more information, call 602-264-2255, or the 24-hour Senior HELP LINE at (602) 264-HELP (4357), toll-free at (888) 264-2258, or TTY/TDD at (602) 241-6110, or obtain online information at www.aaaphx.org.

Consumer Reports

On the internet, go to www.consumerreports.org to consult the Nursing Home Quality Monitor for a list of facilities that have performed well and poorly, and to check state penalty information.

Arizona Department of Health Services

Call the AZ Dept of Health Services (602-364-2536) for updates on facility licenses and possible violations.

II. INVESTIGATE YOUR "SHORT LIST"


Visit the Facility

Make a list of homes and visit each one unannounced. Ask about the amount of time spent 1:1 with the different staff members (such as a nurse or aide). Are staff members assigned to certain residents to create and maintain close relationships? Does each staff member know pertinent information about the residents, such as favorite foods, music, and stories? (See Hospice of the Valley's About Me© form). Ask about flexibility in scheduling for individualized care (Do they only serve meals at certain times or are meals/snacks offered throughout the day?).

Learn About the Facility

Ask about the ownership and administration of the facility. A facility that has changed owners and/or administrators frequently, or is currently for sale, may have problems. Some reports indicate that residents receive better care in independent or non-profit facilities than in large for-profit chains. Knowing overall staff turnover also can be helpful.

Read each facility's Form 2567. This is the facility's state inspection survey, and contains any citations given for inadequate resident assessment, quality of care, dietary services, pharmacy services, infection control, quality of life, social services and environment. Any complaint surveys and plans of correction are also posted in this form. By federal law, this form should be "readily accessible."

Meet the Facility Administrator

Schedule a meeting with the administrator and ask about the mission of the facility and the philosophy of resident care. Is the mission and philosophy carried out by the staff? Does there appear to be good communication and leadership? Ask how the staff is trained. Do they have special dementia training?

Ask About Nighttime Care

What are the policies and procedures for nighttime care? Is the night shift staff awake and available all night? Persons with dementia often have an altered sleep/wake cycle and may need to be comforted, given a snack, or have music played for them if they awaken during the night. Are residents given a variety of options for activities and environment? Can they go outside safely?

Nursing Home Checklist

Download www.medicare.gov/Nursing/Checklist.pdf for a checklist guide from the US government.

AFTER CHOOSING A CARE HOME


Discussing the Move with your Loved One

An out-of-home move is extremely difficult for most people due to the emotional, financial, psychological and social effects. It can be especially challenging for a person with dementia who has lost the insight and judgment skills necessary to know that they are becoming unable to care for themselves. When families step in and make the decision to move the loved one to a care home, they may be faced with negative reactions. This is understandable considering the many losses that the person with dementia has likely experienced.

Moving

On moving day, focus on comfort and distractions to minimize upset. Take along any personal items that may help the person with dementia feel more comfortable. Make sure caregivers in the new setting know your loved one's history and personal preferences, such as music, food, favorite smells and best times of day. Provide them with a copy of your loved one's About Me form. To obtain the About Me, contact your Hospice of the Valley social worker or call the Hospice of the Valley Dementia Program, 602.636.6363.

Consider Having a New Home Gathering

Soon after the move, chose a symbolic object that represents "home" to the person with dementia --such as a wedding photograph or favorite flower--along with his or her favorite music, readings or food. Begin the ceremony with music that is comforting and a personal favorite of the person with dementia. Encourage everyone involved to share their grief and hope regarding this transition of care. Gather everyone together in a quiet and comfortable environment (preferably in the new home with their loved one). Each person will have an opportunity to speak as the chosen symbolic object is passed to them. Conclude with a favorite prayer/blessing/poem and the comforting music used to begin the ceremony. Enjoy food together and place the object in a visible place in the room as a reflection of the love, caring and intention that has been shared.

After the Move

Don't forget to take care of yourself during this process. Know that it is normal to feel a range of emotional reactions to the move, including guilt and relief. Transitions take time for everyone to adjust. Stay in contact with the facility caregivers to learn how your loved one is getting along and to offer suggestions for providing more personal and effective approaches to comfort care.

Visiting

Visits to your loved one can become moments of celebration through the sharing of favorite family stories, gentle hand massages with favored scented lotions, and snacking on preferred comfort foods.

The positive effects of the visit are not dependent upon how much time you spend with your loved one. They are more closely related to the quality of time spent together sharing meaningful connections and providing comfort for the person with dementia. There are windows of opportunity to be "present" even for the person with advanced dementia if we are willing to explore new and different ways to communicate and connect. For advanced dementia, the recommended time-frame to provide these sensory experiences is 5-15 minutes. This time period is a guide and should be adjusted based upon the abilities and responses of your loved one.

All visits can integrate sensory stimulation based upon your loved one's personal preferences. Hospice of the Valley's publication Joining the Journey offers further suggestions for enhancing communication and maintaining connections with your loved one with dementia.