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Stigma and Alzheimer’s Disease: Support and Understanding

December 16, 2019 Leave a comment

The stigma associated with having Alzheimer’s disease and/or any other type of dementia can create a profoundly isolating, painful experience. As a person starts to go through some of the early symptoms, such as memory loss, difficulty in completing everyday tasks, and not being able to follow conversations, that person may be reluctant to share these symptoms with family, friends, or a doctor out of fear of knowing what might come next. Part of that fear can be tied to the stigma that has accompanied Alzheimer’s disease and other dementias.

According to the World Alzheimer’s Report for 2019, stigma takes many forms. It can occur when a person with dementia is no longer accepted by friends due to misconceptions about Alzheimer’s disease. Without a realistic understanding about the effects of Alzheimer’s disease, people may misinterpret behaviors, thinking that someone with Alzheimer’s disease is doing something (e.g., wandering, being paranoid) on purpose. Also, there can be misinterpretation over the abilities of a person with a diagnosis, thinking that the person can no longer make any decisions and does not want to be involved in the care planning. These misconceptions can result in leaving that person out of the conversation and create a worse environment.

Despite the lingering effects of stigma of having Alzheimer’s disease or other dementias, there are many efforts underway to alleviate the stigma and replace it with understanding and much-needed support. There are Dementia Friendly communities in more than half of the United States currently as a part of the Dementia Friendly America network . Dementia Friendly communities are created to support individuals living with dementia and those caring for them. The communities create sector-wide networks to keep persons with dementia engaged and connected.

The Alzheimer’s Association also serves to educate the community and support persons living with Alzheimer’s disease and their caregivers. Through statewide chapters and the national office, there is more information about the disease, as well as ways to cope and find support for dealing with stigma.

The Centers for Disease Control’s (CDC) National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) provides information and support to promote health of older adults. The CDC also provides recommendations for addressing stigma associated with Alzheimer’s Disease and other dementias. Some of their recommendations include encouraging persons with dementia and their family members to discuss any concerns with their health care provider, promote engagement of persons with dementia in senior centers and adult day care programs, and support opportunities to help the general public’s understanding about Alzheimer’s disease through education and information in public settings. A good approach is to keep positive and provide information. The important thing is to meet people where they are, those with dementia and/or Alzheimer’s disease, as well as those who need more information, and offer support for both.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

Senior Care Professionals

Use of Anti-Psychotic Medications: Signs and Symptoms to Watch

December 12, 2019 1 Comment

Imagine that you are in pain and struggling to determine where the pain is coming from. You can’t find the words to express yourself, so you use the only words you have, but no one seems to understand or help. Imagine being in pain for over an hour, and now someone is asking you to do something you prefer not to do. They are asking nicely, and attempting to move you, but you are hurting and do not want to be moved. You want help and relief from your pain, but the person is not helping, and you feel desperate for someone to understand. What might you do to be heard and understood? You might lash out by screaming, hitting, or biting, depending on how much you are hurting and how much the other person is forcing you to move. What might happen next? If the scenario above took place in a long-term care community, it is probable that anti-psychotic medications would be used to calm or sedate you.

Anti-psychotic medications have been given to calm persons with dementia living in a long-term care community, even though those antipsychotics are not intended to be used for that purpose. Off-label use of anti-psychotic medications can have serious and potentially deadly consequences for anyone taking that kind of medication outside the scope of intended use. For older adults, especially those with dementia, that off-label use can be deadly. According to the National Consumer Voice for Quality Long Term Care“, these kinds of medications, when used for other than their intended purpose, can greatly increase the risk of having a stroke, heart attack, diabetes, Parkinsonism, and falls among persons with dementia. Also, if long-term use of these medications in the long-term care setting is detected, it is likely that they are being used as a chemical restraint instead of managing behaviors, neither of which is acceptable. And yet, it happens.

So, how can you tell if someone is being treated with anti-psychotic medications for behavioral expressions? The National Consumer Voice for Quality Long Term Care provides some guidance. If your loved one is suddenly submissive, is not sleeping, or appears lethargic but previously demonstrated behavioral symptoms, such as agitation, hitting, pacing or any other significant change in behavior, then ask the nursing staff what has changed. Any significant and drastic change should be reviewed and addressed. If you suspect that anti-psychotic medications are being used, next steps can include determining if there are untreated infections, medication reactions, or pain. It may take some time and the work from the nursing home staff, but it is mandatory to explore the possible reasons behind the behaviors to resolve them with something other than anti-psychotic medications.

Off-label use of anti-psychotic medications has happened frequently enough in the long-term care setting that the American Health Care Association (AHCA) is taking steps to address anti-psychotics and their use for persons with dementia. The AHCA Quality Initiative (Initiative) is a statewide attempt to improve quality of care in long-term and post-acute care centers. The Initiative, introduced in 2012, focuses on Hospitalizations, Customer Satisfaction, Functional Outcomes, and Antipsychotics. The Initiative’s goal for Antipsychotics is to safely reduce the off-label use of antipsychotics by 10% or maintain a rate of 8% or less in long stay residents and maintain a rate of 1% or less in short-stay residents by March 2021.

Family Caregiver, Senior Care Professionals, The Family Caregiver

Caregiving during the holidays: Acceptance and support

November 18, 2019 Leave a comment

As Julie Boggess remarked in her recent blog, informal caregivers and the care they provide for care recipients represents a substantial part of the long-term care support system. Caring for a loved one with dementia is challenging and can be difficult. Both stress and burnout in caregiving are all too common, as Pam Brandon’s blog notes. This is especially true during the holiday season. The extra demands that accompany this time of year make getting the regular things done more challenging, and the expectations for getting everything done can be overwhelming.

With the holiday season upon us, how can caregivers reduce stress and the potential for burnout? There are several good resources that provide strategies. AARP offers 10 Tips for Caregivers During the Holidays. These tips provide suggestions for managing holiday activities while being a caregiver. Also, the National Institute on Aging provides hints for making the holidays more enjoyable.

One of the best ways to prepare for the additional stress the holidays bring is to manage expectations. Be prepared to discuss changes with people who may not have seen the family member in several months. It is good to prepare for the potential questions about the care being offered and medical management. Questions and offers of advice may not be helpful, but remember you are doing the best you can with the information you have now.

When my mom was moved into the nursing home, sharing her care was difficult. After working with the certified nursing assistants to help them understand who my mom had been, and what her preferences were, sharing her care was a relief. It was also beneficial to see people caring for my mom who only knew her as she was at that time. Seeing how they worked with her helped me come to terms with who she had become. Sometimes it may take seeing a person through someone else’s eyes to accept where you and the person are. And acceptance can bring relief and peace, which is always beneficial.

Overall, remember to be patient with yourself and the person you are caring for. Do your best to accept what others can offer. Some people have the capacity to give in certain ways, but it may not be in the way that you would prefer. Let go of what you can. Acceptance can bring relief, whether it is in accepting help or accepting changes.

Family Caregiver, Hospital Professionals, Senior Care Professionals

Hospital Readmissions: Challenges for the Patient and Caregiver

November 14, 2019 Leave a comment

Hospital readmissions can be costly, in terms of the effect on the patient being readmitted and the related expenses. The American Health Care Association (AHCA) established a Quality Initiative (Initiative) to support the level of care in both the long-term care and post-acute care settings. The Initiative aligns with programs underway by the Centers for Medicare and Medicaid Services (CMS) to address long-term care challenges and costs related to hospital readmissions.

CMS implemented the Hospital Readmissions Reduction Program (HRRP) to reduce payments to hospitals with excessive readmissions as compared to other hospitals. The program, which started in 2010 and began assessing penalties in 2012, reviews hospital readmissions within 30 days of discharge for six conditions: myocardial infarction, chronic obstructive pulmonary disease, heart failure, coronary artery bypass graft surgery, elective primary total hip arthroplasty and/or total knee arthroplasty and pneumonia.

While a person with Alzheimer’s disease or another type of dementia can experience many health conditions, the incidence of pneumonia can be particularly challenging. According to the National Institute on Aging, persons with Alzheimer’s disease can be prone to pneumonia in the later stages of the disease due to potential food aspiration. A person with Alzheimer’s disease is likely to be hospitalized during the disease.

Hospital stays for both the person with dementia and their care partner can be problematic and a source of agitation for several reasons. Moving a person with Alzheimer’s disease or related dementias from a known environment to one that is unknown will likely be disruptive for that person. If the hospitalization is the result of an emergency, both the person with dementia and the care partner will likely be more stressed. Also, transferring into a hospital setting provides several challenges. Typically the person will not know many of the persons providing care in the hospital. These staff members may not have experience, information, or understanding about the unique needs of a person with dementia related to their care. Information about the best ways to accommodate a person with dementia is needed, but even those accommodations may not be feasible. If a care partner or family member is not be available to stay the night with the person, additional challenges can result. The National Institute on Aging has a tip sheet for care partners preparing for potential hospitalizations. Following the NIA guidelines can help care partners plan, yet if the person with dementia or Alzheimer’s disease must be readmitted shortly after discharge, any challenges that occurred previously may occur again.

The Alzheimer’s Association created a policy brief to address reducing potentially preventable hospitalizations for those with Alzheimer’s disease or related dementias. Based on these guidelines, support for the care partner and the patient is needed, both in the home and community setting. The utilization of the strategies, outlined by the Alzheimer’s Association, National Institute on Aging, the Centers for Medicare and Medicaid Services and the American Health Care Association can have a positive impact on the care of those with dementia and their care partners to reduce potential costs and improve health outcomes related to hospital stays and readmissions.