Dementia & PD - Advice For Care Partners

They are no longer able to look after the finances without you checking the numbers over again or go to the grocery store to pick up the milk you forgot to get yourself. And you’ve noticed that the one you love seems to have changed and become more irritable and frustrated with their dwindling independence. This is the type of scenario you may face at some point when your loved one is diagnosed with dementia. A difficult and emotional situation and one that you may need help navigating.

(1) Educate yourself about dementia. If your loved one has Parkinson’s disease, you may already know that dementia may be part of this illness for some patients. Take the time to delve deeper into what changes you can expect, the symptoms that you may have to contend with and how best to prepare yourself as the dementia progresses.

(2) Use the neurologist or movement disorder specialist as a resource.The medical professional involved in your loved one’s care can help you simplify their medication regimen, organize other allied health professionals to help maintain quality of life and assist you to problem solve as different issues arise.

(3) Create a safe environment.Have an occupational therapist come to the home and do a safety assessment. Reduce the chance of falls by reducing clutter, removing small rugs, improving lighting, installing guard rails on the bed, blocking stairs and so forth. Put dangerous items away such as knives, lighters etc. Using lift chairs, stair lifts and adjustable beds will reduce your need to lift or carry your loved one should that level of care be required. Take charge of the medications and dispense the appropriate doses yourself. Register your loved one with your local wandering registry and get them a bracelet with their name and contact information to help identify them should they get lost.

(4) Change your way of communication. In dementia associated with Parkinson’s, there is a degree of slow thinking that occurs. So reduce the speed at which you speak, make plenty of eye contact to ensure they are paying attention, ask more closed ended questions that may only require a “yes” or “no” answer and allow plenty of time for them to respond without interruption.

(5) Make life easier.Cueing is important to help manage your loved one’s dementia. Consider outlining the steps required to complete a task such as getting dressed or brushing teeth. Use a daily calendar with a list of activities for the day to create a predictable flow. Use pictures to label rooms such as a toilet on the bathroom door. Find items that help your loved one maintain their independence such as shoes that use Velcro as closures or shirts that have snaps instead of buttons.

(6) Plan ahead. Planning ahead early in the course of the disease by discussing long-term plans with your partner with regards to their care is helpful. A living will provides even greater direction when it comes to making decisions on their behalf regarding medical care. Don’t avoid discussing the more difficult subjects such as long-term living arrangements.Many care partners have a certain degree of guilt when the question of placement arises. But sometimes the situation progresses to the point where being at home is no longer a safe option for the person affected or the caregiver. In those situations, it is a difficult decision but a necessary one to make and if you have discussed their wishes prior to that time, it becomes a less traumatic choice.

(7) Build a support team. It would be very difficult to take on this level of responsibility yourself especially as this illness progresses. Create a support network of family and friends. Educate them about Parkinson’s disease and dementia so that they understand the daily stressors you face and are better able to support you and provide you with the help you require. Include allied health professionals in your network – homecare nurses, physiotherapists, nutritionists, occupational therapists, speech and language pathologists – all bring a different level of expertise to help you maintain your loved one’s quality of life. Most importantly, surround yourself with family and friends that you can share your thoughts and feelings with and seek out professional counseling if you become overwhelmed.

(8) Take care of yourself.The old adage “you have to take care of yourself if you want to take care of anyone else” is undeniably true when you are the caregiver or partner for someone with a chronic, progressive illness. Burnout is fairly common in these situations. So take time for your own routine – eat well, get regular exercise, maintain your own health through regular medical follow up. Be sure and get some reprieve from your caregiving responsibilities by using either formal respite services, homecare or reliable family and friends. Spend time doing some of the activities you enjoy and spending time with others that you love.

Being a care partner requires strength, dedication and perseverance. It is a selfless act, one rooted in love. It easily can consume your time, your energy, your daily existence. But it is imperative that you don’t lose yourself in the process, that you get the support you need and that you continue to live your life.