A Caregiver’s Perspective on ALR Care for People with Dementia

This article is a follow-up companion piece to Allan Vann’s previously published article, “Advising Alzheimer’s Caregivers About Assisted Living,” which appeared in Annals of Long-Term Care in the January 2014 issue. Allan also provided an update to this article titled “Looking Back at the Assisted Living Decision,” which appeared online in June 2014.

I first observed some of the early warning signs of Alzheimer’s in my wife, Clare, when she was 60 years old. However, Clare wasn’t formally diagnosed with early or young onset Alzheimer’s until she turned 63 in the spring of 2009. That summer, we both joined weekly support groups facilitated by social workers at the Long Island Alzheimer’s Foundation (LIAF). Clare met with others who were in early to moderate stages of Alzheimer’s in one room, while I met with their spouses in another room.

A dozen people attended our weekly LIAF support group meetings when I joined, but within a year or two we had as many as 16 spouses attending every week. Of that group, only two continue to attend. Whereas I no longer go to those weekly support group meetings, many of our original members have remained close. In fact, quite a few of us continue to meet for lunch once a week at a restaurant that is only blocks away from where our support groups met a few years ago. We are all there for each other and continue, in many ways, to function as a support group.

As we begin the year 2015, 11 of our original 16 members have lost our spouses. Of the five remaining members whose spouses are still alive, one spouse receives home health care, 3 are in lockdown dementia units of assisted living residences, and one is in a VA nursing home. Since Alzheimer’s is a terminal disease, all Alzheimer’s spouses understand that it is only a matter of time before widowhood.

Caregiver Concerns About ALRs

I am one of the spouses whose loved one lives in an ALR. Clare is in a safe and secure environment, is happy most of the time, and receives good care. Needless to say, our lunch group’s weekly discussions often involve “updates” on our spouses ... as well as updates on how those already widowed are getting on with their lives. Generally, one hears mostly good things about the care our loved ones received prior to their deaths, or are currently receiving in their residential placements.

However, we also hear of some concerns about ALRs and the reasons for all of our complaints can easily be summarized as follows: There is a lack of sufficient training for those who work with Alzheimer’s residents, and there is insufficient oversight and supervision of these aides.

The vast majority of aides in residential placement facilities are very caring individuals with lots of patience. The vast majority do their jobs properly day in and day out. I am very pleased almost all of the time with the care Clare receives each day from her various aides. But there have been occasions when aides have failed to help Clare with her activities of daily living (ADLs), even though those expectations for aides are written in Clare’s individual service plan (ISP). For example, there have been days when Clare was not helped with shampooing her hair when showering, not reminded to and how to brush her teeth, not helped with application of body lotion, and not helped with getting dressed leading to Clare’s wearing the same outfit several days in a row.

Clare’s bedroom closet is kept locked and only the aides have access. Yet, too many times I have found Clare’s recently laundered clothing lying in a pile on the closet floor and mixed in with dirty clothing. Too many times someone else’s blouses and pants have somehow made it into Clare’s closet and Clare has been dressed in other residents’ clothing. (All of Clare’s clothing has her name clearly marked on a label.) And I have found Clare dressed totally inappropriately for that day’s weather on too many occasions when I have come to visit.

In the scheme of things, I suppose one could say that all of these incidents I have described are relatively minor. And I would agree. There have been very few major untoward incidents, such as mix-ups with medication. But minor incidents, or “glitches,” have continued to re-occur again and again.

ALR Training and Management Needs

Based upon my visits with Clare in her ALR dementia unit, and after numerous meetings with various ALR directors, and after many discussions with fellow spouse caregivers who are or have been in similar situations, I feel that there are two reasons for repetitive minor glitches in an otherwise A+ facility: (1) lack of sufficient ongoing staff training, and (2) absence of supervision and ongoing staff evaluation during morning and evening hours.

Management at Clare’s ALR sets very high expectations for dementia unit aides, and that is as it should be. However, if management is absent, how can aides be held responsible if they do not meet these high expectations? If ALRs do not have managers onsite in the early morning hours or in the late evenings when aides are supposed to be working closely with residents on their ADLs, how can ALR management be sure that their high expectations and standards for care are being met? The short answer to this question is, they cannot!

Management must invest the time and money to provide supervision of aides not just during normal daytime and afternoon hours, but also during the times when aides are assisting dementia residents with their ADLs in the mornings and evenings. Aides need to be observed and evaluated on a daily basis. Training must be provided to aides on an ongoing basis both to review management’s standards and expectations, and to review particular issues with each individual dementia resident.

Each time management has provided retraining to aides in Clare’s ALR, there has been a noticeable improvement in quality for a period of time. However, whereas staff retraining focuses on general standards and expectations, staff responsible for assisting residents with ADLs must also be reminded on a regular basis of each individual resident’s particular needs. Each resident has an ISP and I have been told that a copy of each resident’s ISP is in the office and “accessible” to all staff. But it is unrealistic to expect aides to periodically review resident ISPs in the office during the day.

With the possible exception of a few extremely conscientious aides, in my experience reviewing each resident’s ISP just does not happen. I know this for a fact since there have been so many instances of my asking aides why this or that has not been done for Clare and they have told me they were unaware of this or that having to be done, or that no one ever told them to do that ... despite this or that clearly noted in Clare’s ISP “accessible” in their office.

In addition to maintaining a file of ISPs in the office, it would seem helpful if there would be a posting in each resident’s room of a copy of relevant pages from that resident’s ISP about assistance needed while in that room (ie, information about dressing, showering, hygiene). Such a posting would enable aides to quickly refresh their knowledge of each resident’s needs on a regular basis. Aides could scan information in check-off columns on an ISP in seconds and be up to speed on the degree of assistance residents need in their rooms. Or, perhaps, a posted index card in each resident’s bedroom could list just 2 or 3 important reminders about that resident’s ADL needs re hygiene or dressing. 

A simple file box in the dining room with one file card on each resident would also inform aides about particular dining needs of each resident. Such cards would allow new aides or aides who don’t usually work closely with some residents to become more familiar with each resident’s specific needs. For example, Clare is supposed to be given a grilled cheese sandwich if she won’t eat her regular meal. But on several instances when new aides were working in the dining room, Clare had not eaten dinner when I arrived and no aide knew that the protocol was to give her a grilled cheese sandwich. Was that information written on Clare’s ISP? Yes. Had any of those aides read her ISP? No. A file box in the dining room with just a note or two about residents might be very helpful, especially for new aides or aides filling on an emergency basis.

Absent of ongoing training and supervision, and absent of the presence of full-time management, most ALR aides will continue to do an excellent job most of the time. But “most” of the time should not be the acceptable standard. The only acceptable standard should be that all aides do an excellent job all of the time. Pertinent information on each resident should be readily accessible to all aides in the areas where that information will do the most good ... in each resident’s bedroom/bathroom, and in the dining room.

But in order for excellence to be the norm, staff training and retraining must be planned and provided on an ongoing basis throughout the year. Aides need to be periodically reminded of standard and expectations. Aides need to be periodically reminded of personal issues with individual residents. And aides must be observed and supervised when implementing ISPs during morning and evening hours. All too often there is no full-time management presence when aides are supposed to be assisting residents with their ADLs in early morning and late evening hours.