Note: Dr. De Leon is uniquely qualified to talk about Parkinson’s Disease related issues. She (aside from being an MD, is also living with Parkinson’s Disease). Learn more about Maria at Parkinsonsdiva.com
Making the decision of placing a loved one in a long term facility care such as assisted living can be fraught with mixed emotions. But, finding the right one can be even more maddening unless you have clear goals in mind.
This task can be especially challenging if you are trying to find care for someone (or yourself) that is living with PD, or Parkinson’s Disease.
Many assisted living facilities are able to effectively care for PD residents, but they might not market themselves to the PD community, making the search for an acceptable PD-friendly assisted living community all the more difficult.
Aside for the things we all want – cleanliness, friendliness, as well as affordable care. Ask if they provide help/assistance or financial support to those in need?
Here are some tips of things you may consider while doing your search and choosing a facility.
Layout and Safety (in and around the facility):
First, as any good real estate agent knows- location, location, location! How accessible is the location you are considering? Is it close to your home? The doctor’s office? The hospital? The store? Pharmacy? Are there shops or hairdressers on site or nearby? Is transportation provided for the residents to and from these places particularly to doctors’ offices?
For those of us with PD, mobility is a big issue, so being close to those things (and people) important to us is essential.
If you are not very familiar with the area, consider using an app like Google Maps to survey to area topographically.
If you do happened to live out of town or not close by, are there hotels nearby for your visits or family gatherings? Can residents have weekend or holiday passes? What are visitation policies?
Second, before committing yourself, schedule a tour of facility paying close attention to exterior and interior appearance as well as demeanor of patients and staff. Pay close attention also to lighting and odors. Our olfactory is closely linked to our memories.
Therefore, more pleasant smells are likely to trigger happier thoughts making a stay at the residence much more pleasant.
Are there enough windows to bring light in?
Chronically ill patients especially those with neurological disease can already be predisposed to low vitamin D. If there is no sun exposure or chance to sit outside in a patio, this problem can worsen exponentially. Subsequently, increasing the risk of depression, confusion, memory loss and even increase bone fractures from minor trauma due to osteoporosis and bone loss.
Third, is the patio area enclosed or secure with walking trails? What do the living quarters look like? Are they well-lit at night to prevent confusion and falls? Are the showers and bathrooms easily accessible and with rails and help buttons? Do they have roommates or can they have private room? Are the floors nonslip and leveled? Are the hallways well-lit and wide enough to allow easy passage with motorized or assistive walking devices? Do they have rails in bathrooms and in hallways? How do they ensure patients don’t leave the premises especially those with dementia and other cognitive problems? Are the rooms labeled with pictures or bold signs so residents don’t get confused or lost? Are there bold colors or patterns to help patients navigate the area better? Are all areas clearly visible?
Circular layouts are better for visibility from nurse’s station, easy access to rooms in case of emergency. Plus, this avoids the frustration many with gait impairments experience when reaching a cul- de- sac, particularly those with advanced Parkinson’s disease which tend to have freezing of gait making it difficult to turn in tight spaces and much more likely to fall.
Fourth, are there any reports of abuse? Are there protocols in place to handle and prevent emotional or physical abuse?
- For further information on your facility, you may want to look at BBB (Better Business Bureau) or Caring.com reviews
Fifth, how do they deal with sun downing, mood swings? Aggression? Psychosis?
- What are their views or protocols in restraining chemically or physically?
Sixth, are there protocols in place for emergencies? When do they notify physician and family? What hospital do they refer to?
- Who assesses residents’ health and cognitive functioning? How often is that assessment repeated?
- Does each resident have a formal, written plan of care? Is there a team meeting to discuss short term, intermediate, and long term goals? Will they be able to care for your loved one if he or she deteriorates?
- Will their specialist or PCP be able see them at facility?
- Does the facility help with all ADLs, including bathing, toileting, and eating?
- Is the facility able to accommodate patients with dementia, Parkinson’s or other neurological diseases? Ask specifically! Is the memory care section separate or locked? As a neurologist, my experience has shown that patients even those with cognitive impairments fair better when exposed to external stimulation that will help maintain or increase cognitive function- major part of this is socialization. If residents are secluded this limits their chances for interactions causing a faster downward spiral.
- Will they provide transportation for their residents to doctor’s office? Will someone accompany loved one until visitation is over? This is crucial especially for those who are cognitively impaired (e.g. Parkinson’s dementia, Alzheimer’s, vascular dementia).
- Are there trained professionals to assist with the specific need of your loved one, e.g. Parkinson’s Disease?
- What is the turnaround of staff and administrators? Get numbers or names of other families who have patients in these facilities to get their opinions.
- Do they have a social activities coordinator? Social activities such as painting or music therapy will help enhance brain function and overall well -being.
- What is the ratio of patients to nurses? Especially important if your loved one requires extra attention.
- Do they run on schedule on medications? This is particularly important for Parkinson’s patients where a 15 minute window to receive medications can result in devastating consequences including increased pain, psychosis, and trauma.
- Do patients who need extra attention get placed close to nurse’s station or assigned a specific person trained in that field?
- Do they provide ancillary services such as PT, OT, and ST? Do they have a renal unit on site or nearby if one needed for dialysis?
- How compliant are they with diet needs and doctors’ orders for specific use or avoidance of certain medications?
Video: Nursing Management for Residents with PD
In the end, no one facility is going meet all these requirements nor every facility perfect for everyone; but the key is finding the one that covers most of your loved ones needs in a friendly, caring, and safe environment.
Photo by M. Anderson