Alzheimer's disease cannot be prevented, cured or slowed down, but the disease is predictable. * While the timetable is less predictable, an early diagnosis may allow time to research care issues.
*Erin Yelland, assistant professor in the School of Family Studies and Human Services at Kansas State University

When Mom or Dad can no longer live safely on their own, or when a husband or wife cannot provide the care required by the spouse, lifestyle changes become necessary.

Some statistics:

• An estimated 60 to 70 percent of older adults with Alzheimer’s disease or other dementia live in the community.

• 75 percent of those living in the community live with someone else; 25 percent are alone.

• 80 percent of care provided in the home is by family caregivers.

• A person turning 65 this year has almost a 70 percent chance of needing long-term care in the future.

• More than 50 percent of residents in assisted living and nursing homes have some form of dementia or cognitive impairment, including Alzheimer’s disease.

Decisions about the next step in life are limited by financial resources, availability of services and even knowledge about services in the area.

“We are the place to go with any questions about any issue with aging or disability,” said Michael Johnston, family caregiver coordinator with Southwest Kansas Area Agency on Aging. He is located in Dodge City, and can be reached at 1-800-742-9531.

SWKAAA provides funding for a variety of in-home care services aimed at keeping older Kansans in their homes as long as possible. These programs may include personal care, homemaker services, respite care, chore services, and a host of other life supporting services.

The program is based on income, with a zero co-pay up to 100 percent, Johnston said.

He can share with families a list of agencies and private-pay individuals who can provide in-home care. Agencies do background checks on the people they hire; if a family chooses a private caregiver, they will need to do the research themselves.

Home caregivers may not be able to provide all the help a person needs, but it may be enough to give the family some respite, and keep the individual in the home a little longer.

Visit swkaaa.org for a link to “Explore Your Options,” prepared by the Kansas Department of Aging and Disability Services. It addresses many concerns and questions about in-home care.

Even if an individual qualifies for assistance, it’s still up to the local healthcare agencies to determine if they can provide the level of service needed.

Most people with Alzheimer’s disease will eventually require residential care, Johnston said.

According to the 2015 Genworth Financial cost of care survey, the average cost of skilled nursing in Kansas is $5,019 per month.

Kansas has 345 certified Medicare and Medicaid nursing homes, with 22,672 available beds for skilled nursing residents. When the survey was updated, 80 percent of beds were full.

The Alzheimer’s Association recommends visiting several facilities; both by making an appointment and in unannounced visits. It also recommends asking whether the staff is trained in dementia care and what the training covers. Ask how the staff handles challenging behaviors and whether appropriate programming is available. Visit alz.org for more information.

The preference may be for a facility designed especially to meet the needs of residents with dementia. The number of beds in such units increased in the 1980s but has decreased since 2004.

The Reflections unit at Parkwood Village is designed in a square, so if a resident leaves the dining table and can’t remember which way to go to get “home” they’ll eventually get there. Rooms are relatively small, as are closets — smaller spaces mean fewer choices, which can be overwhelming, said Parkwood Village Administrator Sharon Will.

A memory box is placed outside each room. Families are encouraged to place photos and mementoes there that the resident will recognize as their own, and also stimulate some conversation from staff members. A life history provided by family members also helps foster a one-on-one relationship between staff and resident.

“The biggest thing is we let them be who they are at that moment,” Will said.

A retired registered nurse, who worked third shift for much of her career is up at night. There is an area where she can update her charts and post to a pretend medication record. Residents who spent their lives as homemakers can help fold laundry and serve lunch. Men who were mechanics can fiddle with PVC pipes and locks.

Reflections is a locked unit with 16 studio apartments and a locked courtyard. It is currently occupied by 17 people — one married couple and 15 singles. The staff: resident ratio is 1:8, and activity staff are present from 9 a.m. to 7:30 p.m. seven days a week.

A diagnosis of dementia — at any stage or in any form — is required for residence. Will said apartments start at $5300 per month and increase depending on levels of care needed. They do not accept Medicare or Medicaid, which she said is common in special care facilities.

About 50 percent of residents in Parkwood Village assisted living and Reflections memory care have long-term care insurance. Paying for long-term care will be the topic of another story.