3 Tips to Support Family Care Partners When Their Loved One Moves to Assisted Living
If a person living with dementia moves into a full time care environment, such as Assisted Living, the family is often assaulted by a myriad of conflicting feelings…..Guilt (I told her I would always take care of her), Inadequacy (I should be able to take care of her), Fear (will they really take good care of my loved one?), Anger (it’s not fair that I have to deal with these difficult issues), Exhaustion (I can’t go on like this) and Relief (thank goodness I’m getting some assistance).
When Assisted Livings or other LTC settings accept a new resident, they are also accepting the family. Caring for the families of residents living with dementia can be as important and complex as caring for the actual residents! All of their fears and doubts have to be addressed and the Assisted Living needs to have a program to “wrap their arms” around not just the new resident but also the family members. Most likely the family has had a long struggle to find the right level and type of care that would be best for their loved one. Recent trips to the hospital, changes of medications or health status, and finally the realization that they can’t continue to do full time care at home, can leave them emotionally and physically exhausted.
Here are three strategies that Assisted Living communities can use to support the family care partners and give them confidence in your care:
1. Assign one leader in your community as their case manager.
Every leader is assigned a group of residents that they “case manage” and are responsible for. Initially the case manager is in frequent contact with the family, getting to know the family’s preferences, priorities and “hot buttons”.
For the new resident and their concerned family members, moving into a care community can be like that first day at a new school – so many new faces and names. By assigning a case manager, the family feels they have one person as the point of contact and don’t have to “tell their story” over and over again to many different people. As they become more familiar with other staff and develop trust, the family will begin to talk with others. Initially however, by assigning a case manager, they will feel they have a person who is accountable for the quality of care and will be their advocate and answer their questions. This can go a long way towards building family confidence in your Assisted Living community.
2. Have an on-site support group for family members.
From my experience of working in Assisted Living, I have utmost respect for the important role that support groups can play in helping families feel comfortable, encouraging them to take good care of themselves and begin to let go and trust you.
Invite new families to join the support group. This can be a great source of comfort and information. Other family members have an appreciation for the trauma and fears that new families are experiencing and participation in a group can give the members an outlet to share their emotions.
Members of a support group also encourage other members to take good care of themselves. A simple question such as “What did everyone have for dinner last night?” can bring to light problems such as sadness from eating alone, and risks of poor nutrition.
3. Plan fun social events for family members off site.
Sponsoring a gathering for Happy Hour at a local restaurant, a meet-up at a Museum or an afternoon of bowling, can add some normalcy for family members and give them something to look forward to. For a short time, they are just a group of adults having a social time that is not necessarily linked to caring for someone living with dementia.
Many care partners have necessarily put their own lives and interests “on-hold”. Friendships may have slipped away and they may be out of practice or not have the energy to arrange social events. Inviting them to a fun occasion can give them permission to begin to enjoy life again and explore their community.
I’ve seen wonderful friendships forged from family support groups.
If you work in Assisted Living and care for residents living with dementia, what is your plan of care for your family members? Are you meeting their needs?
If you work in Assisted Living and want
To make your dementia care program even better,
Or if you need assistance in
Planning care for a loved one,
E-mail or call me for a free consultation
Have a great day!
Anne Ellett, N.P., M.S.N.
There are many research studies being conducted about lifestyle choices and effect on prevention of cognitive decline. Many studies are validating the benefits of a healthy diet and an active lifestyle on maintaining brain health.
It’s impossible to report on all of the recent and current studies but from time-to-time, I want to highlight results of some key research studies related to diet or lifestyle.
The MIND Diet - adherence to the MIND diet was associated with significant lower rate of cognitive decline. The MIND diet divides our food choices into 15 groups:
The good choices includes these 10 groups:
The MIND diet is healthy for your heart and vascular system, and will also decrease your risk of stroke and heart attack! This is great news – this is something we can all do to decrease the possibility of brain and cardiac disease – there isn’t any medication that can offer all of those benefits!
You can start following the MIND diet with the Healthy Mind Cookbook by Rebecca Katz and Mat Edelson. It will inspire you to make good choices!
In another recent study, a link was found between being obese or overweight in mid-life and increased risk for earlier onset of Alzheimer’s disease. This study was conducted by the National Institute on Aging (NIA). The body mass index (BMI) of people 50 years old was followed for many years, and results showed that people who were overweight in mid-life were more prone to developing Alzheimer’s disease at a younger age than those people who were not overweight. Perhaps the link between being overweight and earlier development of Alzheimer’s disease is related to the increased risk of diabetes and hypertension that obesity can cause.
All good reasons to pay attention to what we put in our mouths – Now go enjoy a glass of wine with some hummus and whole-grain crackers – sounds wonderful!
Sometimes “Less is More” when it comes to good medicine and I’d like to tell all of you about a wonderful initiative by the American Board of Internists– this initiative is called the Choosing Wisely Campaign.
Having less can be a desirable goal in good medicine – having less interventions, less medications, less tests done, and less hospitalizations. Having less doesn’t mean less care, it can mean more judicious and beneficial care and less exposure to unnecessary risks.
Choosing Wisely aims to promote conversations between clinicians and patients by helping patients choose care that is:
• Supported by evidence
• Not duplicative of other tests or procedures already received
• Free from harm
• Truly necessary
As part of the Choosing Wisely Campaign, the American Geriatrics Society (AGS) has identified tests and procedures commonly used with older patients whose necessity should be questioned and discussed.
Many of their recommendations are directly related to good care for people living with dementia. A few of their recommendations include:
• Don’t put feeding tubes in patients with advanced dementia.
• Don’t use antipsychotic medications as the treatment for behavioral symptoms of dementia
• Don’t use benzodiazepines or other sedative-hypnotics in older adults
• Don’t prescribe cholinesterase inhibitors (i.e. Aricept) for dementia without periodic assessment of perceived benefits and adverse effects
• Don’t use physical restraints to manage behavioral symptoms
Many of these recommendations seem obvious but these are still medical practices frequently used throughout many areas of healthcare.
The full list of “Things Providers and Patients Should Question” will spark discussion about the need—or lack thereof—for many frequently ordered tests or treatments. You can read the entire list of recommendations by AGS.
If you are caring for an elder parent, discuss these topics together – plan for quality care but minimal intervention!
Have a great day!
Anne Ellett, N.P., M.S.N.
There’s an exciting event happening next week for those of us interested in change in long-term care. The Pioneer Network’s annual conference is in Chicago Aug. 2 - 5th. Pioneer Network is a national coalition of people interested in changing the culture of aging and how the aged are cared for. As advocates for older people, they are working for changes that allow the choices of older individuals to be respected, whether they live in their homes or in a nursing or community facility. Their upcoming conference is all about culture change in long-term care.
One of Pioneer Network’s Initiatives includes setting standards for person-centered training on dementia care. Person-centered care moves away from impersonal, fragmented and regimented care towards care that includes the psychosocial, spiritual as well as the physical being.
Imagine an environment where the caregivers are trained to stop and listen and validate instead of walking on past that person affected by dementia who is holding out their arms? A friend of mine who recently toured a nursing home told me he was so saddened by the tour director who focused entirely on him, ignoring the pleas of the residents for assistance. While trying to impress him with their compassionate care, the director disregarded the needs of the residents. My friend is continuing to look for a better place for his mother to reside.
There is free live-streaming from the Pioneer Network conference next week Aug. 3 and 4th. Tune in and listen to a few sessions: http://www.pioneernetwork.net/Events/2015Conference/videostreaming/
Stories can captivate and hold our attention like nothing else. Sometimes, for those of us working with people affected by dementia, it’s easy to feel like their stories are slipping away, much like when we wake in the morning and can’t remember the details to the dream that gripped us during the night.
I was visiting a Board and Care home in southern Calif. last week and the staff person had everyone arranged in a circle of chairs – it was time for “20 Questions”! “Who can tell me the capitol of the state of Nevada?”, “Does anyone know the year we landed on the moon?” “Who was the president of the United States in the year 2000?” and so she intoned on…The circle of participants was mostly quiet, knowing that if they waited long enough, she would pronounce the correct answer.
Did she know that one of her older participants had worked at NASA during the moon launch? As she passed over him to announce the next question, he began to talk about his work at NASA and watching the launch of the Columbia in July, 1969.
Instead of asking what year the US landed on the moon, what if instead she had said, “I’d love to talk about the moon – what does the moon mean to you? Can you describe the moon? Do you have any stories you can share about the moon?” Without asking a question that has a correct or incorrect answer, perhaps she would have heard Ted’s story about watching the Columbia fly towards the moon in 1969 from his vantage point at NASA. That would be a wonderful story to hear.
StoryCorps is a non-profit organization formed to record and share stories from people all over the United States https://storycorps.me/ . This model of oral history goes back to the 1930’s when the WPA recorded stories from across the U.S. during the depression. It offers a unique opportunity to interview and record for yourself, your family and all of posterity the stories of those people affected by dementia.
This is our chance to hear the stories of those affected by dementia – to listen to their memories of long ago and also to ask them, “How are you feeling now?” “What changes have you noticed?” “What are your concerns?” “Is there anything you want to tell me?” Let’s record them and share their words and wisdom!
There is a free app to listen and record stories – when you search for stories on StoryCorps about dementia/aging/Alzheimer’s, not a lot of stories are available. Let’s enrich that library of recorded memories. Interviews on https://storycorps.me/ range in length to a couple minutes to over an hour in length.
The instructions are simple:
Choose someone to interview.
Pick great questions. Find a quiet place to record. Listen closely
When you're finished, share your interview with the world.
Help create an archive of the wisdom of humanity
Here’s a couple of my favorite stories from StoryCorps – I hope you enjoy,
Please let me know if you share your story on StoryCorps, I’d look forward to hearing it!
Recently 2 different families contacted me about urgently helping them find a good location for care for their loved one affected by Alzheimer’s disease.
In one case, the gentleman was already living in Assisted Living but no one had picked up that he had a urinary tract infection (UTI). The infection became severe and he required hospitalization (a hospitalization that probably could have been avoided if the staff had been attentive to changes in his demeanor and activity). Now that he was being discharged from the hospital, his daughter didn’t want him to return to the same Assisted Living.
In the second case, the woman lives at home with her spouse and she has had a couple falls at night, one breaking her arm. The family was looking for a place where both of the parents could live together, but have assistance during the night.
How do you know what to look for when you are looking for memory care in Assisted Living?
This is a very complex topic, but here are some quick tips:
Licensed or registered nursing, on-site, 24 hours a day, is a big plus! Over 70% of people living in Assisted Living have cognitive impairments and over 90% have multiple chronic illnesses, such as diabetes, hypertension, or cardiac disease that require regular monitoring. If nursing is not available, small health problems (such as UTI’s) can become emergencies and the person is faced with the trauma and expense of what could have been a preventable hospitalization.
You’ll learn a lot if you visit places more than once and at different times of the day. You can stop in unannounced and see how you are received. Ask to meet with the Administrator and the nurse to hear from them what type of services they can offer your loved one affected by dementia. And review the cost of care in detail – if the Assisted Living charges for various “levels of care”, the monthly cost can be a surprise – be sure you have all the details on their charges. And good memory-care locations may be full and have a waiting list – go ahead and put yourself on the waiting list!
If you would like to learn more about how to choose an Assisted Living location that can provide good care for your loved one living with dementia, contact me at: