Assisted Living to Support Cognitive Loss and Dementia
Submitted by Anne Kenny, MD
Together in Dementia
Park Place, located in Portland, Oregon, was established in 1981 and is credited with being the first modern assisted living facility. Its amenities included private rooms with locking doors for each resident, 24-hour staffing coverage in case of medical emergencies, as well as different social community areas.
The idea was to provide a home-like environment to allow an aging individual a supportive community with the focus on the resident’s personal preferences and quality of life, not their medical situation – as was the norm for those in a nursing home.
What is Assisted Living?
Assisted living homes are group living settings that offer housing in addition to assistance with personal care and other services such as transportation, meals, and housekeeping. They usually have 24-hour staff, but some do not.
They are not regulated by the federal government; therefore, assisted living homes vary from state to state. They usually do not provide medical care, although they may assist with medication and meal reminders or assistance.
Some assisted living facilities have special expertise in dementia and provide programming, staff training, and resident support for needs due to dementia.
Why All This Talk About Assisted Living?
Assisted living has blossomed in the last 40 years. There are currently 28,900 assisted living communities in the United States. As mentioned, they are regulated by each state and there are no federal regulations for Assisted Living. This means there are no federal standards.
The medical situation of individuals residing in Assisted Living has changed markedly since their inception. For this reason, a group of 19 health and aging experts came together to discuss the medical and mental healthcare needs of those in Assisted Living.
They report that:
“Today, 53% of Assisted Living residents are aged 85 years or older, compared with 42% in nursing homes. More than half need help with locomotion and have hypertension, arthritis, cognitive impairment, and depression, and one-third or more have osteoporosis, chronic obstructive pulmonary disease, diabetes, heart disease, and chronic kidney disease, and visit an emergency department each year.”
Their report and the accompanying editorial in the Journal of the American Medical Association discuss recommendations for changes to address the increasing complex needs of individuals in Assisted Living.
In many of the recommendations (there are 43),
“Experts agreed on the importance of staff training on person-centered care and end-of-life care and advance care planning; that care and service plan meetings be conducted as needed (not strictly on a prescribed schedule); that residents and direct care workers attend those meetings; that those meetings result in documented discussions about advance directives; and that able residents provide consent for new psychoactive medications.”
What Can be Done by Current and Prospective Assisted Living Residents?
The editorial by Drs Lam and Covinsky point out:
“Interventions to improve Assisted Living care will require equipping residents and their representatives to make better decisions about their options; they ultimately have the greatest stake in ensuring high-quality care in a mostly consumer-driven market.
“The results from this panel could be streamlined into specific questions to guide conversations between prospective residents and ALs to better understand how needs will be met as circumstances change.
“Questions like ‘how do you develop care plans for your residents?’ and ‘how do you manage aggressive behaviors?’ would help families envision potential challenges that professionals know arise but which the families may not.”
The emphasis is mine and I whole-heartedly agree with Drs. Lam and Covinsky!
Further in the editorial, Drs Lam and Covinsky say:
“We have seen places where a memory care unit charges upwards of $10 000 a month for ‘dementia care,’ yet is little more than a locked door to prevent residents from leaving the unit and not the sensitive and personalized care advertised.”
Choosing Assisted Living and Asking the Right Questions
But what if you need Assisted Living? What if skilled nursing is too much care and you are looking for a facility to enhance socialization, offer support in activities of daily living such as bathing, help with medication, and some level of supervision? What can you do to prepare for a move to Assisted Living?
I believe there are several steps you can take to prepare you for choosing an Assisted Living community.
Understand the disease and what changes accompany the disease progression, so that you can be ready for the next phases and what may be the next adjustment or adaptation that will be needed. I recommend my book Making Tough Decisions about End-of-Life Care in Dementia – it is about more than just end-of-life. It is about making decisions such as this in changing housing needs.
Use the AARP checklist to guide your beginning questions and comparisons between different Assisted Living options.
As Drs Lam and Covinsky recommend, expand those questions about the services, promises, and standards you would like met for yourself or your family member with dementia.
- How do you develop care plans for your residents?
- Are residents and family members invited to the care planning – how often, how informed of the meetings, how informed of the plans (written document?)
- How is resident/family informed of change in medications?
- How is resident/family informed of change in status (functional, medical, emotional), change in medications, approach to distress or agitation, need for emergency evaluation?
- What is the policy and procedure for an emergency room visit?
- What is your staff training on dementia – how is it delivered, how often is it reinforced or updated?
- How did you decide on the training and what evidence do you have of the quality?
- What engagement activities are planned and how are they chosen?
Conclusion
Finding the right Assisted Living community for yourself or your family member with dementia is an important task. Begin to prepare early – most of us wait until a time of crisis, but this is an important move.
Using these strategies, you can make an informed decision that fits the needs of your family. By understanding the disease and its progression, utilizing AARP’s checklist to compare communities, and asking specific questions about the services and standards of any given Assisted Living community, you can ensure that the transition to a new home is as smooth and stress-free as possible.
Taking these crucial steps will help you find a safe, secure, and supportive environment for yourself or your family member.
Anne Kenny, MD
Together in Dementia
