By, Scott Bauer, Elder & Disability Law Clinic Student, Fall 2022
Dementia effects 3% of the American population aged 70-74 and more than a third of people aged 90 or older. The speed at which dementia progresses can vary from person to person, such that some individuals suffering from dementia can continue living independently for years while others will need support very soon after diagnosis. Of course, the ability for someone to continue living independently after being diagnosed would depend at least partially on how early their condition is formally identified.
The subject of dementia can be an emotional one touching on issues of autonomy and one’s soundness of mind. Fear, frustration, denial, and anger are all common responses to dementia conversations. These challenging prospects can lead families to ignore clear warning signs and, rather than take proactive measures, instead adopt a prolonged wait-and-see approach to planning for the future. Delaying planning efforts can be to the detriment of both the individual with dementia and his or her loved ones.
Loved ones may adopt the wait-and-see approach out of respect for their loved one, or in an attempt to avoid difficult discussion, or because they don’t know how to begin (i.e., analysis paralysis). However, a reactive approach can be overly reliant on the ugly situation to trigger next steps. The ugly situation can be extreme incidents of hoarding and unsanitary living conditions, wandering, or trip and falls that leave a victim immobile for days if they cannot recall ways to contact loved ones.
In addition to the trauma these events cause, they also create an immediate urgency that can be difficult to handle. People may be surprised to learn affordable long-term care facilities have long waitlists, and independent senior living facilities will often not admit new residents that already have a diagnosis of dementia. Decisions about long-term care can be costly, critically important, and are best made with careful consideration over time, so here are a few strategies to help families proactively discuss future plans for a loved one suffering from dementia:
- Communicate Honestly: the outlook for caring for a loved one can seem financially and physically daunting. Often, the burden of caring for a loved one can fall disproportionately on the family member who is closest in proximity to the individual suffering from dementia, or perhaps to the family member who is most established financially. Be open and honest about these challenges and fears.
- Share Responsibility: determine the stakeholders involved and determine how everyone will play their part.
- Don’t Criticize: part of sharing responsibility means empowering others to have their thoughts and concerns heard.
- Consider Finding Help: attorneys can aid you in addressing concerns with power-of-attorney and future decision-making as well as financial issues around Medicare, Medicaid, and Social Security Disability Insurance. There are support groups for dementia caregivers, and counselors can facilitate and structure some of the conversations around future planning for an aging loved one.
Perhaps most importantly, loved ones should begin the planning process early. The earlier a topic can be brought up the more easily people can come to terms with the reality of the situation and transition into a problem-solving state of mind for the difficult decisions that lay head.
 See Fact Sheet: U.S. Dementia Trends, Population Reference Bureau (Last visited Sept. 18, 2022), https://www.prb.org/resources/fact-sheet-u-s-dementia-trends/.
 See The Progression and Stages of Alzheimer’s, Alzheimer’s Society, (Feb. 21, 2021), https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/progression-stages-dementia.
 See Alzheimer’s: Dealing with Family Conflict, The Mayo Clinic (Nov. 19, 2020)https://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/alzheimers/art-20047365.
 See Silivia Sorensen, Ph.D., et al, Issues in Dementia Caregiving: Effects on Mental and Physical Health, Intervention Strategies, and Research Needs, National Institute of Health (Jun. 19, 2011), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3774150/
 See e.g., Erickson Senior Living (Last visited Sept. 18, 2022), https://www.ericksonseniorliving.com/ashby-ponds/faq
 See supra note 3.