Is Advocacy the Answer for Assisted Living?

Is Advocacy the Answer for Assisted Living?

Is Advocacy the Answer for Assisted Living?As a daughter with a mom in skilled nursing care, the PBS documentary entitled “Life and Death in Assisted Living” really upset me.  My mom has vascular dementia and I have been her advocate for the last 7 years in assisted living.  Those of you who follow my blog know that I moved my mom 1000 miles into a skilled nursing care near me – about 10 weeks ago.  This transition happened because I was 100% in tune with my mom’s needs.

We all know someone who had a horror story during a hospital stay.  Last week one of my colleagues was shocked to walk in and find her dad in soft restraints after heart surgery.  He was 82 and not coming out of the anesthesia well.  The nurse said that she did not have enough staff to help him, so she had to use soft arm restraints.  My colleague asked if they could please remove the restraints.  She and her mom each took one arm of her dad and literally held him thrashing around all night with no sleep.

Every senior or human being needs an advocate to make sure that the care they are paying thousands of dollar per month in any level of care is being provided.  Trying to be a good advocate for my mom and living two states away – just about killed me.  You have to have eyes on your loved one or pay someone to come in and be your eyes – particularly when they have dementia.

When a senior has dementia, like my mom, they get to the point where they cannot communicate all their needs, pains or desires to either caregivers or family members.  There needs to be an advocate who truly knows that person and can look for and understand his or her unspoken needs on a regular basis.

If my colleague had not shown up to be an advocate for her dad, he would have been in soft restraints all night.  If I had not flown in every few months to see my mom with my own eyes, areas of concern would not have been addressed.  My mom had good care in assisted living with a caring staff, but she is my mom and I know her best.

It always makes me sad when a future senior resident considering senior housing has no family or only distant relatives.  They may ask a lawyer or a niece in Canada to become their advocate or power of attorney.  Will this remote person advocate properly on his or her behalf – if the senior can no longer communicate verbally?

There are great senior housing options available with loving caring staff, but it is always wise to have an advocate that knows your unspoken needs when you can no longer speak on your own behalf.

Tip:  Future residents and their family members need to do their homework as they explore all senior housing options including assisted living.  Always ask what the longevity of staff is at each retirement community, assisted living, memory care or skilled care nursing that you are considering for yourself or a loved one.  Staff turnover is an indicator of an underlying management or ownership problem in all levels of senior care.  Look for communities with longevity of staff.

Diane Twohy Masson is the best-selling author of “Senior Housing Marketing – How to Increase Your Occupancy and Stay Full,” available at with a 5-star rating.  The book is required reading at George Mason University as a part of its marketing curriculum.  Within this book, the author developed a sales & marketing method with 12 keys to help senior living providers increase their occupancy.   Masson developed this expertise as a marketing consultant, sought-after blogger for senior housing and a regional marketing director of continuing care retirement communities in several markets.  She has also been a corporate director of sales and a mystery shopper for independent living, assisted living, memory care and skilled care nursing communities in multiple states.  Most recently Masson was recruited to consult for two debt-free Continuing Care Retirement Communities in Southern California – Freedom Village in Lake Forest and The Village in Hemet, California.  Interestingly, this career started when she was looking for a place for her own mom and helped her loved one transition through three levels of care.


  1. Linked In
    Judy Svendsen (Director Of Community Relations) wrote:

    “In my opinion: Advocacy is a largest part of caring for any special population. It does not even need to be a family member. A good case manager a caring friend or neighbor can be an advocate in lieu of a absent or out of state family.”

    • Thanks Judy, I agree 100%!

  2. So I guess being at my assisted living for over 15 years is a good thing! My executive director, some of our receptionists and home care staff,15 as well. And over ten for some tenants, dining staff, maintenance. Weare doing something right!!

    • Yes Kim, your team’s longevity is fantastic!

  3. Linked IN Assisted Living Professional Network
    By Roberta Nelson, RN,EMAR,MAR,ePRO,NOTARY

    • Way to go Roberta for being there for your mom!

      • Assisted Living Professional Network

        Diane, I would not have it any other way. I took 8 AM to be sure she as cleaned and dressed and to breakfast and 8 pm to be sure she was washed and ready for bed. Another sister was there for lunch every day and the other 2 spot visits. EVERYONE NEEDS AN ADVOCATE. If there is someone without any living relatives and need an advocate, I would love to be able to help. Maybe a new position for me to go to!!!!
        By Roberta Nelson, RN,EMAR,MAR,ePRO,NOTARY

        • Thanks for sharing your “how to” story Roberta! That is dedication! I am not curious what you encountered on these many visits.

  4. Linked In Boomers: Aging Beats The Alternative

    I think the show was one-sided and might scare people away from getting the excellent care that is provided in many assisted living facilities. I guess it’s all about ratings! You can find horror stories in every industry. Do you agree?
    By Lorie Eber

    • Lorie, I have mystery shopped alot of assisted livings and they are not created equal. The average family member has a hard time determining which community is good enough to put their parent. When a parent has dementia and can’t communicate their needs it makes it even harder.


    I took my position as the property manager at an independent living development for seniors a year ago this month. 15 years ago, when the facility was first being occupied, approximately 75% of the residents were healthy couples. This year, as the original residents are transitioning out, I am moving new residents into 16 of 58 patio homes. I see troubling trends: 75% of new residents are widowed or divorced women. 19% or more are childless. At least 25% have serious memory issues. Two residents are moving in with a disabled senior child. The majority of new residents generally are unfit for independent living: too old and too sick. Upper management turns a deaf ear to my warnings. My question, is advocacy the answer for independent living?

    By Amy Causey

    • Amy, this is the new “independent” senior. Seniors are waiting longer to move. The statistics say that 50% of seniors aged 85 and older have some dementia. So it sounds like you are doing well with 25% having memory issues. And yes, all seniors need an advocate for healthcare needs.

    I find the comment too old for independent living interesting! I don’t think the age is the problem, the cognitive skills and physical limitations are the determining factor. I think many seniors need an advocate. My most independent client,still living in her home, is 101 years old.
    By Peggy O’Malley

    • Peggy, one of my favorite residents is turning 99 in October! She swims everyday and has one glass of wine!


        I think all seniors need an advocate in their lives no matter where they are living. We all need to think ahead and plan our later years.
        By Peggy O’Malley

  7. Linked In National Senior Living Providers Network
    Couldn’t agree with you more. But let’s extend this to all seniors. It is a planning process we all need to learn about self advocacy in dealing with the medical industry. The industry itself is so complicated that unless you know how to navigate and get the best care for yourself you will end up with the system in control of your care and not you!

    • Right on Charlene!

  8. Linked In Alzheimer s Association

    @ Diane ~ What a wonderful decision you made to move your mother closer to you. I moved my husband just a little over a month ago about 350 miles closer to me by ambulance. It was a 7-hour drive but well worth it. He made the trip with flying colors. On the other hand I was the one that got exhausted after the move.

    There is absolutely nothing to worry about if families refuse to give up their primary caregiver status once a loved one moves into assisted living, nursing care, rehab, etc. I see this as the main problem. Not so much the poor care or neglect. There would be hardly any of that if families took their responsibility. What do you think?

    ~ Ethelle

    Dr. Ethelle Lord
    Pioneer in Alzheimer’s Coaching

    By Ethelle Lord, DM

    • Interesting questions Ethelle…not everyone is in a position to spend hours per day with their loved one while they reside in some type of retirement community. Regular unannounced checks are always outstanding to learn what is really happening with care.

  9. Linked In Marketing to Seniors

    My heart goes out to you, Diane. I recently moved my mother to a CCRC because she needs the supported-living environment.

    She was in the hospital last year and I spent the first night pulling her arms down to keep her from yanking out her ventilator. I stayed home the second night, convinced that she was going to be okay and later was told they had to use restraints. I wasn’t happy about it, but I understood that it was for her safety.

    If someone can’t be there for a patient every moment, healthcare staff cannot be expected to provide dedicated care to each individual on a floor or unit. It simply isn’t feasible.

    The best we can do is to advocate for people we care about and make sure that staff know what the patient/resident’s desires are. It’s a tough spot to be in.
    By Marcie Lovett

    • Thanks for continuing the conversation Marcie and Joan! Great comments!

  10. Linked In Marketing to Seniors

    There has to be someone “on the ground” to regularly and frequently monitor the situation of a person in a facility, advocate for that person, provide direction and support to the person rather than physical restraints/drugs, and communicate with family and/or others authorized to represent the individual. It is heartbreaking when family think they have provided care to a loved one, and that doesn’t turn out to be the case. There is no way that a facility – hospital, rehab, assisted living, skilled nursing facility – can provide one-on-one care to an individual. There isn’t enough staff in the best circumstances, and frequently a facility is understaffed.
    By Joan Van De Moortel

  11. Linked In Elder Care Professionals

    Advocacy is important in any inpatient care situation. While there are facilities like the ones featured in “Life and Death in ALFs” there are also many facilities that give good and loving care. The problem I have with only highlighting the ones that have poorly trained and unloving staff is that families finding themselves in the position of needing care worry that they are all like that. As an elder care consultant I steer clients towards the ones that are safe and loving. Over forty years experience in the long term care community has equipped me to do this.

    By Dianne Bangham, RN

    • Way to go Dianne, seniors and families need help navigating through the sales jargon.

  12. The Elder Care Network

    Hello Diana,
    I, too, got upset with the Frontline program and really want to advocate to make things better. I would like to contact you via e-mail and chat. You can contact me: and I would like to get as many people together to make new laws and be the voice for those who needs it the most. The senior population.
    By Kelly Harper

    • The Elder Care Network

      Is Advocacy the Answer for Assisted Living?


      I just dealt with another Alzheimer sad 60 yr old today. Kelly I will email you my number. Because of my twin’s health issues I have seen plenty and God has revealed much. Somehow we need to be the voice.
      By Sherry Friedges

      • Linked In The Elder Care Network

        I know that if we can get numbers on our side, people to speak up and let it be known we are out there, we can be their voices! I truly believe that my passion and caring for this population means to fix something that is broken. But, I need people to help me to do this. And not only in my state of Colorado, but all the states! A strong team of passionate people to make positive changes. It won’t happen over night and it may be an up hill battle, but never the less, it is a battle that needs to be fought and won. Sherry, I got your number and e-mailed you back. Diana, please stay in touch.
        By Kelly Harper

        • Kelly, frail seniors definitely need a voice. Let’s connect through linked in.

  13. Elder Care Professionals

    Shall we increase the liveliness of this discussion? Not all children know their parents, nor do they all know what is best for the parent, or what the parent needs. There are devoted children. Absolutely devoted. They understand the parent, respect the parent’s needs and advocate for excellent care.

    Too many children however, want their parent infantilized, restrained and treated like a child because they (the adult children) feel that is “best.”

    What is BEST for the ADULT living in assisted living is based on the ADL needs, the clinical needs and where possible (absence of dementia diagnoses) CHOICE Of the resident.

    It takes a highly responsible ALF with skilled staff to be able to assess for individual needs and then provide for those needs in spite of what misinformed and sometimes guilt ridden children want. There are also other complications when the adult children were treated badly, even abused by the parent. That makes for a very complex situation when care matters come into play.

    I had a son tell me that he had nothing but total disgust and dislike for his father. He fortunately, allowed us to care for his Dad doing what Dad needed. We did indeed know best for that resident. Better than the son.

    So, advocacy is critical, but not every adult child is the best advocate for the parent.
    By Edith Gendron

    • Wow, powerful stuff Edith. Almost all of us come from dysfunctional families and many Boomer children are not capable of making good decisions for his or her parents. Others want to help but don’t have a clue.

  14. Linked In Boomers: Aging Beats The Alternative

    Not sure “advocacy” as much as “embarrassment,” coupled with hitting them in the pocketbook. Advocacy too soft, unpredictable, nobody takes you seriously — they figure you’ll go away. Get the media, licensing authorities and pro-se court action going on your side. Make it an ax fight, and be sure to bring your ax!
    By F. Todd Winninger

  15. Linked In Boomers: Aging Beats The Alternative

    No one can underestimate the value of advocacy in any area where a loved one or client are in need of care.For many just navigating the health care delivery system is a great challenge and being proactive is always results in the best quality of life.
    By Joyce Simard

    • Linked In Boomers: Aging Beats The Alternative

      Totally agree Joyce. Not only am I the advocate for my own 82 year Dad, this is a huge lesson I teach my coaching clients. My Dad’s last hospitalization would have been a total disaster with many adverse possibilities lurking had I not been with him 24/7.
      By Rhonda Caudell RN, CCM, CGCM

  16. Linked In Boomers: Aging Beats The Alternative

    I have always said that any time someone enters a hospital or any type of medical facility they need to have advocates. There are some wonderful AL communities out there with caring staff. So many times I work with families and they are more interested in the newer upscale properties which may or may not have a reliable and caring staff. i try to help my clients understand that when you move a parent into AL or a higher level of care it is all about the care . you are not purchasing real estate. You are purchasing care.

    Yes Diane I agree and often tell my clients to look at the staff turnover to give you a good idea of what kind of care your parent will receive. Also when you visit notice how many people are smiling, both residents and staff. If the caregivers are not smiling there is a problem. I don’t know about you but I do not want grumpy people taking care of me. 😉
    By Kathryn Watson

  17. A good conversation is going here – thanks for all the input. Kathryn, I loved your comment on smiling as an indicator of life in the community from the staff and resident perspective.

  18. Diane, I absolutely agree that advocacy is the answer for all transitioning seniors! I have been my mom’s caregiver for over 6 years now, and she is currently in hospice care in an assisted living facility. It is a balancing act that any of us who care for our loved ones knows well. Sometimes spot visits are all that’s needed to calm our hearts and help with the guilt. Other times longer visits are needed to make sure that we are our loved one’s voices. As my mom nears the end of her journey I’m taking the experience I’ve learned to help others. Thank you all for your comments and uplifting suggestions that you’ve posted. GREAT topic Diane, and one that seems to have struck a nerve with many of us!

  19. I completely agree that advocacy is such a critical part of geriatric care. I recently graduated with an M.S. degree in gerontology/counseling and have not been able to find employment because hospitals, nursing homes and assisted living facilities must hire licensed staff to take care of residents or patients. I have been advocating for the under-served aging and have observed there are so many people out there (old and young) that have no one to advocate for them. We have turned into an extremely litigious society; therefore, it seems every field now wants individuals who are certified or licensed. While the focus is on “big corporate” needs, we are completely failing to address basic human needs. By the time we finally get around to classifying and licensing yet another “specialized field” . . . . how many people have to suffer? Once again, we turn a blind eye!

  20. Dianne,
    Thank you for saying it in a way every family should hear. I advocate for several elders, not my family members and unpaid, but sometimes the family doesn’t step up. Advocacy is dire in the institutions today. I wish I could advocate for elders who are actually in a low staff turnover facility. It’s a nightmare to deal with staff, who after two years, still don’t know their charges, or care.

    Thank you to all the wonderful, caring staff and caregivers and families who want the best for their patients or loved ones!

  21. Linked In Linkage Marketing Senior Living

    I do strongly agree that everyone in a ALF, Nursing Home and Hospital need an advocate. My company (Embracing Life) is a patient advocacy service who specializes in ALF, Nursing Home and Hospital advocacy. We make visits to the facilites on behalf of the families due to they live out of town or even in town and would like someone to check on their loved one. We write up a report of the visit and supply pictures of the loved one to the family. If we see that something is wrong we will notify the family accordingly. People have been real receptive of this type of service we provide.
    By Stephanie Hopkins, BS, ACA

    • Nice!


    Great article! Most people don’t get involved or concern until it is too late. We just introduce our new program – S.A.F.E. (Senior Advocate for the Elderly). The goal is to assist caregivers with issues like this. Our staff, Vicki brings over 16 years with background in facilities. Much needed services. I shared on both Facebook and LinkedIn. Too many people need to know.
    By Kearn Cherry

  23. Linked In Marketing Professionals Advocates for Seniors

    I just read the article. Thank you Shannon. The tips are very useful. If families are better able to find out what facilities are indeed good facilities then non-conforming care facilities would naturally go out of business.
    By Brandon Beyer

  24. Great tips, Shannon. Many years in the home care and assisted living industry have led me to strongly believe that advocacy is important for inpatient care. Assisted living is truly a blessing for families and friends who simply cannot be there 24/7 for their loved ones. It’s important to find a company that you trust and one that will tailor to your needs.

    All the best.

    Home Care Manchester