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  • Writer's pictureChristopher Zambakari

Empowering Advocacy: Best Practices for Caregivers and Families Caring for Residents with Dementia

Dr. Christopher Zambakari, B.S., MBA, M.I.S., LP.D.

Owner/Operator; Desert Haven Home Care, Apollo Residential Assisted Living, Villa Fiore Assisted Living-Prescott Valley

 

Under a single home care umbrella, Desert Haven Home Care, Apollo Residential Assisted Living, and Villa Fiore Assisted Living-Prescott feature unparalleled care, feature unparalleled care, service and advocacy in the compassionate treatment of senior citizens in need of medical attention. Offered in a familial setting, the facilities are teamed by professionals passionate about their work and fully engaged in the welfare of residents. Each facility proudly provides patient-centric supervisory, assisted and directed care, short-term respite stays and memory care support for Alzheimer’s and dementia patients.


The following exploration of the role of advocacy in dementia care is one of a series of regular informational blogs relative to the field of service, care and the treatment of our elderly.


Editor’s note: It is important to clarify that dementia is not a specific disease but rather a general term referencing loss of memory, language, problem-solving and other thinking abilities. Notes Ability Central, a California-based nonprofit assisting families and caregivers, dementia is a group of symptoms caused by other conditions, and Alzheimer’s is the most common form of dementia, contributing to 60-70 percent of all dementia cases. Other forms of dementia include Lewy body, frontotemporal, Huntington’s, mixed dementia and vascular.

 

Dementia is the great cat burglar. Sneaky. Quietly entering, undetected. Trouble lies in the cat burglar’s wake. Sadness, trauma, uncertainty. Loss. Dementia can do the same. Not always, but often, it sneaks up on its victim slowly, betraying its presence only when it’s too late.


Dementia, says the Alzheimer’s Association, “a general term for a decline in mental health severe enough to interfere with daily life.” Alzheimer’s is a specific disease and the most common cause of dementia. The two are often spoken of and written about interchangeably; in this short study of advocacy and caregiving, dementia is the umbrella under which memory loss, the decline in reasoning and thinking skills, and changes in behavior reside.


Caring for a loved one with dementia can be challenging, but being an effective advocate for their needs can make a significant difference in their quality of life. As the owner and operator of three assisted living care homes in Phoenix, Glendale and Prescott Valley in Arizona, I write to share with you the ways I have seen, firsthand, advocacy make a difference in dementia care in such intimate treatment settings.


Credit: Monkey Business Images / Shutterstock

Understanding and implementing advocacy should be a critical component in your approach to caring for a loved one with dementia. This article explores key strategies and emphasizes the importance of advocacy in providing optimal care for individuals with dementia in residential settings.


Dementia is not going away. It is one of this country’s most expensive old-age health conditions and the most time consuming for family caregivers. As many as 6 million people ages 65 and older live with Alzheimer’s disease in the U.S. – about one in 10 older Americans. That said, estimates of the number of people living with dementia varies depending on definitions and sources used; the Alzheimer’s Association estimates that 5.8 million Americans were living with Alzheimer’s dementia in 2019 – most of them age 65 or older.


In my years of working with the elderly in my three home care settings, I have been supported by a team of care professionals who have helped me advocate on behalf of our resident patients. They have introduced programs of care and activities that encourage resident social and environmental interactions, leading to a greater sense of ownership of their condition and treatment specifics.


What we have found, working as a team to provide a better quality of life for our resident patients, is that you are a critical component of your loved one’s comfort. As you work to guide a loved one through dementia, your role must be that of an active, participating partner – an advocate – on behalf of their treatment and care. Consider these time-tested, proven steps necessary to provide the best-possible caregiving.


Educate yourself: Take the time to learn about dementia, its symptoms, and its progression. Understanding the condition enables you to better advocate for your loved ’one’s needs and communicate effectively with their care providers. Stay updated on the latest research, available treatments, and support services.


Working closely with agencies and organizations, governmental entities and medical facilities, I have found any number of sources for all things dementia: the Alzheimer’s Association Desert Southwest Chapter provides a range of services and programs, the Arizona Department of Health Services offers dementia caregiver support, and the city of Phoenix is a designated “Dementia Friendly City” and offers regular “Memory Café” events – virtually and in-person – for both patents and caregivers alike. Other associations can be found through a simple Google search.


Build a support network: Connect with local support groups, organizations, and residential care services that specialize in dementia care. These networks provide valuable resources, information and emotional support. Collaborating with others who share similar experiences can help you navigate the challenges and gain new perspectives. The sources listed above can help. The Memory Café is a safe and supportive place (guest speakers, snacks, activities) and an excellent opportunity to create or expand your network of people working their way through the same challenges of dementia care.


Foster open communication: Effective communication with dementia care providers is vital for ensuring your loved one receives the best possible care. Maintain open lines of communication, regularly discuss their needs, and express any concerns or preferences.


As a caregiver – as one concerned with a loved one’s treatment – your interactions with the patient can have a dramatic effect on whether they will feel comfortable raising issues or talking about concerns. Be aware of your own “blocking” behaviors, such as interrupting your patient, changing subjects too quickly, minimizing the concerns of a patient, and condescending responses.


Effective communication is not limited to two-way conversations between patient and caregiver. In my experience in our Arizona care residences, establishing a communications partnership with those charged with the care of your loved one and its care team fosters a collaborative approach to treatment and advocacy.


Participate in care planning: Engage in care planning meetings and provide input on your loved ’one’s individualized care plan. Advocate for their specific needs, preferences and goals. Your insights and observations can help shape a comprehensive care plan that addresses their unique requirements.


Monitor care and observe changes: Stay actively involved in your loved ’one’s care by regularly monitoring their well-being and observing any changes in their behavior or condition. Document these observations and share them with the care team. Being attentive allows you to advocate for appropriate interventions or adjustments to their care plan.


Promote meaningful activities: Advocate for engagement in activities that promote cognitive stimulation and emotional well-being. Encourage the care team to incorporate personalized activities into your loved ’one’s daily routine. Meaningful activities can enhance their sense of purpose, boost self-esteem and contribute to a higher quality of life.


Advocacy plays a crucial role in ensuring the well-being and quality of care for individuals with dementia in residential settings. By educating yourself, building a support network, fostering open communication, participating in care planning, monitoring care and promoting meaningful activities, you can become a powerful advocate for your loved one.

The team of professional caregivers that has helped build our homes’ success in Phoenix, Glendale and Prescott Valley know the importance and high value of advocacy and the active, meaningful inclusion of loved ones in the complex process of care and treatment.

If you have questions about a loved one’s mental health, seek professional advice. Just as you will surround your loved one with support and encouragement, make sure you have trusted advocates around you who will provide the same succor and assurance. If you have a loved one with dementia, we’d like to help. We’d like to work with you on your loved one’s needs, and we’d like to assist you with your own.


Whatever you choose to do, don’t do it alone. Find your team, find a way to deal with the cat burglar.

For more information, you can reach me or one of my team at info@deserthavenaz.com


 

About the Author

Dr. Christopher Zambakari is the owner and operator of three Arizona-based assisted living care homes – Desert Haven Home Care in Phoenix, Apollo Residential Assisted Living in Glendale, and Villa Fiore Assisted Living in Prescott Valley, Arizona. He provides direction and oversight to a team of licensed medical and caregiving professionals to ensure the highest levels of customized care, service and advocacy at each of his facilities. Zambakari is founder and CEO of The Zambakari Advisory, an international consultancy in the areas of strategic intelligence, program design and transitional processes. He is a Hartley B. and Ruth B. Barker Endowed Rotary Peace Fellow, and the assistant editor of the Bulletin of The Sudans Studies Association.


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