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This post is a guidance sheet to be given to respite caregivers to assist them in providing respite care to your loved one.  Please use this for both formal and informal respite care support.  best wishes.

MAP Guidance for Our Respite Caregivers

Thank you for caring for us. The purpose of this guidance is to help ensure that your time with __________ is joyful and warm. ________ is in the early stages of Alzheimers Disease. By following this guidance, you can help us support _________ ‘s changing capacities to enable _________ to stay here, happy and safe, to tap into good old memories, and create safety in his/her the present experience.

Always wear your name tag. ______ may not always need it, but it is always helpful for it to be visible. Please introduce yourself each time when you arrive. With a smile, look into __________’s eyes, say your name and that you are here as a friend to spend some time together. A simple “Hi ____, it’s _____, your friend” is all that is needed. It gives _____ a clear reference point and makes for a great start to the visit.

When speaking to __________, please speak in short and simple sentences. Long dialogues with detailed explanations are not helpful. Brief conversations with breaks are better than long conversations. Please ask questions so that the answer is either yes or no. Do not ask ____ to answer questions that requiring choices beyond yes and no. If there are options, ask yes/no questions in sequence and stop when a yes answer is given.

Listen to what ____ says. Sometimes it will be easy to understand, sometimes not. But that doesn’t matter. The only thing that really matters is confirming that you hear what _____ is saying, and that you are there as a friend, happy to be supportive. Do not get confused by unclear content or by questions that seem to ask for you to respond to the content expressed or hinted at.

The real question, always, is based on ______ feeling uncertain and perhaps frightened, so fundamentally, it is “Can you help me feel safe.” Don’t tell _______ that he/she is safe, and expect that to be responsive in his/her understanding. He/she need to actually feel safe. Soft tones in your voice, gentle touch on the hand or arm, and affirming that you hear what is being said. Use your body language and the intonation in your voice to convey the experience of being safe.

Tasks and Games are great things to do together. Here is a list of things ______ enjoys (examples: playing card games like “go fish” or “high Card wins”, gardening, listening to and singing old songs together, looking through photo albums). Of course, just sitting having tea or walking together is wonderful.

When walking with _______, loop your arm through his/hers. That way, your looped arm gives _______ cues for the direction you are heading, the speed to walk at, and when to turn or go straight. It also helps ______ to avoid tripping accidents by providing extra stability when going up and down steps.

Do NOT turn on the TV unless it is to stream something, or watch a DVD, without commercials.

The one constant is love and affection. Remember that loving kindness eases every difficulty.

Don’t hesitate to ask me for suggestions to make your visits special for both __________ and you. Again, welcome to our home and thank you for your support.

Dear Friends,

On August 24, Greg MacDonald and Lyle Weinstein, co-authors of The
Montessori Alzheimer’s Project  will present a workshop introducing
Montessori principles to dementia care.  The workshop is being hosted
by Loyola University in Maryland.

In this program, the focus is upon providing home caregivers with
practical approaches that improve the day-to-day lives of both the
caregiver and the loved one who has dementia. When MAP approaches are
implemented in the home, the opportunity for living at home in a
loving and supported way is optimized.

The linked brochure includes additional details. as well as a direct
link to register for the program.  https://ce.loyola.edu/course/view.php?id=1177

The direct registration link is:

https://aspire.loyola.edu/products/2939374750?

Please feel free to forward this to other people you know that might
be interested in this workshop.

best wishes,
Lyle

https://ce.loyola.edu/course/view.php?id=1177

Understaffed and Neglected: How Real Estate Investors Reshaped Assisted Living is an investigative report in the Washington Post that details some of the awful consequences which can result from a profit-centered operating model for assisted care facilities. When real estate investment vehicles compete with and control the facilities’ management/operations budgets, funds can be siphoned away from patient care and instead directed to investors at a rate that prevents the delivery of promised care to residents. It is a frightening exposé.

This is one of the reasons that The Montessori Alzheimer’s Project maintains its focus on guiding families in using Montessori methods to allow caregivers to continue to support their loved ones at home, with safety, dignity and surrounded by love. The longer your loved one can stay at home, the longer they are insulated from many of the perils in profit-driven care facilities.

If you have implemented our recommendations, you may have found that you’ve been able to keep your loved one at home with you in a much better situation, for both of you. This is not to say that, at a certain point, it is likely that you may need to move your loved one to a facility. It is our view that the further down the road this has to take place, the better.

Not all facilities are operated in ways that prioritize distributable profit over care. Care facilities and their staff that are resident-centered may be found everywhere. However, articles such as this Washington Post piece remind us of the critical importance of informed care facility selection. The article also serves to emphasize the need to remain vigilant once our loved one becomes a resident there.

When selecting a care facility, pay close attention to staffing, turnover rates of staffing, and do not be misled by pretty exterior designs and attractive slogans. Remember that it is the facility’s lowest paid staff members who are the people who provide the majority of the hands-on care that your loved one needs. Look to see how personal care assistants, the maintenance staff and everyone else not in the marketing or medication side of the facility look and behave. Observe the quality, respect, and compassion, or lack thereof, expressed through their interactions with the residents.

Keep in mind also that if management/ownership demands are overwhelming for the facility’s staff, then there is no way for them to provide the warmth and close attention that your loved one needs.

Once your loved one has moved into the facility that you have chosen, maintain your vigilance along these lines. Use your access to the facility to see its day-to-day operations. This enables you to look even more closely at the quality and consistency of care that your loved one, and other residents, are receiving.

The Montessori Alzheimer’s Project provides information you need to make life at home as workable as possible and to make any needed transition as safe as possible. This information better prepares you to better interact with the facility and its staff. You know what has worked for your loved one, and why. This can and should be shared with those then responsible for day-to-day care.

As we wrote in The Montessori Alzheimer’s Project, a key Montessori insight is that human beings have a fundamental need to do meaningful work. We are all looking for meaning in our lives, beginning in childhood and continuing throughout our lives. This does not end with a diagnosis of dementia. 

An article in the Washington Post about Dementia Cafes in Japan is a society-level, real-world demonstration of the basic principles we identify as keys to care: Standardize, Simplify, Signage and Redirection. 

Even the title of the article highlights the power of kindness, patience, and safety: At Japan’s Dementia Cafes, Forgotten Orders Are All Part Of The Service

It is uplifting in so many ways, for participants with dementia, for caregivers, and for caregivers whose loved ones have passed away. While our focus is on applying those principles in the home, to see them in action at a public commercial venue brings tremendous joy.

https://www.washingtonpost.com/world/2023/09/19/japan-aging-elderly-dementia-care/

Here is the link for my talk this morning on Caregiving as a Spiritual Discipline.   The focal point was the generosity  called Protection from Fear.  I hope it is helpful.