Effects Of Parkinsons Disease On Caregivers
Caregiving for a person with Parkinsons disease can result in significant physical and emotional stress for caregivers. If the caregiver is a spouse/partner, there is the added component of an intimate relationship that is forever changed. Fear, denial, anger, guilt, and sadness are common emotions felt by caregivers of individuals with Parkinsons disease.
Support groups for Parkinsons disease are available that caregivers can attend with the individual living with Parkinsonâs disease and there are support groups for caregivers alone. Parkinsons disease support groups are available in several locations across the country and there are many support groups online.
If a person is a caregiver for someone with Parkinsons disease, it is important for them to acknowledge the feelings and struggles they are having at times and seek out support.
It is not uncommon for caregivers to let their own needs go unmet while they focus on the person with the disease however, this often leads to burnout and health problems for the caregiver.
Respite care is a care option that is strongly recommended for caregivers who simply need a break from caregiving or need time to run errands and attend to their own needs. Family members or friends may be able to help provide this respite break for a caregiver. Alternatively, there are agencies that provide this type of care and service both in and outside oneâs home.
Stages Of Parkinson’s Disease
Not every individual with Parkinson’s will experience all the symptoms, and if they do, it won’t be in the same order or intensity. However, there are typical patterns of progression in Parkinson’s disease, which are defined in stages. Doctors use two scales to help them understand the disease’s progression. Hoehn and Yahr stages are used to describe motor symptoms, while the Unified Parkinson’s Disease Rating System is more comprehensive and accounts for mental functioning, mood, and social interaction. Here is a summary adapted from the Parkinson’s Foundation:
Why Choose Assisted Living That Offers Specialized Parkinsons Care
As previously mentioned, it is crucial that a retiree with Parkinsons disease retire into an assisted living community specializing in taking care of the patients with Parkinsons. These communities typically include medication monitoring, meals, personal care assistance, 24-hour emergency care, laundry, housekeeping and recreational activities that can benefit older adults who have Parkinsons disease. In addition to this, key reasons to choose senior living facilities that specialize in treating Parkinsons patients include:
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How To Find The Best Assisted Living Facility For An Elderly Adult With Parkinsons Disease
It is also worth noting that the progressive nature of Parkinsons disease is irreversible. As reluctant as your elderly loved one may be, it is important to consider when may be the right time for the transition into an assisted living facility.
Individuals with Parkinsons disease confront an array of challenges. The behavioral adaptation of the disease is different each day. A senior citizen may be fully independent one day and not need assistance with performing daily routines. However, they may struggle the very next day with accomplishing the simplest personal care tasks that they otherwise may have taken their ability to perform for granted. If a caregiver is uninformed, then such a change of behavior as a result of Parkinsons disease may result in considerations about whether the elderly adult is lazy, manipulative, or acting. Thus, the assisted living facilitys caregiver needs to be aware about the unpredictability of Parkinsons disease. Some of the objectives to search for to identify whether the assisted living facilitys staff qualify to care for your elderly adult with Parkinsons may include:
Parkinson’s Disease And Assisted Living
- California Assisted Living Association :“The voice of Assisted Living”Phone: 916.448.1900
- Elder Abuse:Report suspected abuse by calling 800-677-1116
Popular Help Pages:
- Assisted Living Definition & Description
- Discussing Small vs. Large FacilitiesFacility Size
Parkinson’s Disease Information:
Summary: A discussion about the relationship between Parkinsons Disease and Assisted Living. Assisted Living can offer an important and viable living and housing alternative for individuals affected by Parkinsons a progressive and debilitating disease. Assisted Living can also provide substantial relief to those who have assumed the role as caregiver. This article is not to be considered as, or used as medical advice.
I receive a fair number of daily emails to our site about all aspects of assisted living. Often times, the emails and messages I receive further clarify to me that assisted living is a confusing subject, and industry and that families faced with the need for long-term care for a loved one may not fully understand what assisted living offers, or can do for them.
Here are a few of the questions we have received from families or individuals asking about assisted living and Parkinsons Disease.
Both my mother and my sister live in NH. My mother has Parkinsons my sister has MS. I was wondering if you accept MedicAid. Nanci
Parkinsons Disease:
Responses to this article:
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Evaluating Assisted Living Facilities
A 2-page PDF outlining things to consider when evaluating an assisted living facility for yourself or a family member. Areas to consider are the environment, comfort level with staff availability and communication, residents service satisfaction, charges and fees, transportation options and availability, and medical & financial emergency policies.
The Importance Of Experienced Medical Staff
When researching options ask assisted living communities if their staff has specific experience with the disease and the progression. PD patients should be around experts who are familiar with the varying symptoms of the disease so that physicians can be aware of any subtle changes. Medication also needs to be evaluated and adjusted continuously to offset symptoms or progression.
Many patients are misdiagnosed with PD when they actually have Lewy body dementia. Because they both present similar symptoms, its very easy to do. An assisted living community that has memory care specialists and experts on hand can catch and monitor changing symptoms. It can be difficult for a caregiver to notice or a physician who only sees a patient a few times per year. Proper diagnosis is incredibly important because medication prescribed for PD can complicate and worsen Lewy body dementia.
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Meal Preferences And Requirements
Some people with PD have swallowing problems and require modified diets. You will want to find out if the kitchen can accommodate special diets like a mechanical soft diet.
People with Parkinsons need a healthy, varied diet, and too much protein can interfere with certain PD medications. Talk with the director of food services to ensure that they can accommodate dietary preferences and requirements.
The Symptoms Of Parkinsons Disease
Parkinsons disease gradually impairs a persons ability to move, walk, talk and swallow, and it typically develops when patients are in their 50s or 60s . For some people, the condition can be severely debilitating in the long term, while others are able to function relatively well even after 25 years of living with the disorder.
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Choosing An Assisted Living Residence: A Consumer’s Guide
This 18-page booklet outlines what activities and services assisted living facilities provide residents, resident’s rights, how facility personnel is managed, paying for assisted living, tips for choosing a facility, a checklist of key questions to ask staff, a cost calculator , a checklist before signing the service contract, and some thoughts about moving day.
Activities Of Daily Living Support
Just as with other assisted living residents, those residents with Parkinsons disease will need some assistance with activities of daily living, including bathing, personal hygiene, dressing, and grooming. In particular, people with Parkinsons may have issues with movement that require supportive care.
Moving and balance, starting and stopping, can be difficult, so we have care partners who can provide hands-on help in steadying residents as they dress, shower, or other activities so that they feel stable and confident, says Lea Ann.
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Legal Considerations With Parkinsons Disease
In addition to addressing financial needs, it is also important to address legal concerns. Similar to financial planning, starting the legal planning process early allows the individual with Parkinsons disease to be involved and express their wishes for future care and decisions. This reduces the need for guesswork by families and allows for the person with Parkinsons disease to designate future decision-makers on their behalf.
Early Parkinsonâs disease planning also provides time to work through the complexities of legal issues that are involved in long-term care. Legal planning should include:
- Making plans for both health care and long-term care
- Making plans for finances and property
- Designating a person to make decisions on behalf of the individual with Parkinsons disease
To prepare most legal documents, an individual must have the legal capacity to do so. Legal capacity means that an individual is capable of having legal documents prepared and making decisions about what to include in these documents.
A lawyer will be able to help an individual and their family determine if a person has the legal capacity to participate in the preparation of legal documents. For this reason, it is important that a person and their family begin preparing any legal documents they wish to have as soon as possible while the individual can still participate in this process.
Some common legal documents to consider preparing include:
- Power of attorney
- Guardianship/conservatorship
Medication And Health Care Questions
- What is the residence policy regarding storage of medication, assistance with medications, and medication record-keeping?
- Is self-administration of medication allowed?
- Who coordinates visits from a nurse, physical therapist, occupational therapist, or other specialist if needed?
- Does a doctor or nurse visit the resident regularly to provide medical checkups?
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Make It Feel Like Home
Finally, once all the boxes have been removed boxes and the closets organized, take the time to make your parents new living space feel like home. Nan Hayes, founder of MoveSeniors.com, recommends placing furnishings, accessories, pictures, clocks, and bath and kitchen items in a way that mimics the previous home. is a great way to help your loved one feel settled and reinforces their sense of self, empowering them to venture more readily into community, she says.
Finding A Nursing Home: Dont Wait To Do The Research Until You Need One
None of us want to be discharged from the hospital into a poor-quality nursing home, but many dont realize that you have a choice. Advice from experts is to become familiar with nursing homes in your area before you are even hospitalized. Dig into government reports and conduct your own inspection. This article tells you what to look out for when evaluating your options.
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Evaluate And Understand Your Own Needs
First things first, you should sit down with your loved one and any current caregivers to discuss the needs and most important services for the care of your loved one. Here are some questions you should ask:
You should explore a caregivers handbook and other essential documents in addition to these questions. That way, when you begin to explore facilities, you have a well-understood list of what it is that youre looking for so everyone involved is on the same page. This will allow for a smoother transition.
What Is Slr Doing To Support Those With Parkinsons
- Movement & Fitness Classes: The American Parkinson Disease Association recommends regular movement and physical activity as a way to maximize health and independence, so recreational and therapeutic programming options at our assisted living communities offer senior-friendly fitness and movement opportunities each day, like Tai Chi, boxing, Yoga, dance and strength training. All programs can be modified for varying levels of ability and cognition.
- Hosting special presentations and speakers: SLR communities regularly host expert speakers and professionals to discuss topics relevant to seniors and their families, including Parkinsons disease.
- Training for associates: Our staff goes through specialized training to help aid in the care of people with cognitive conditions, including Parkinsons.
- Mediterranean-inspired dining program: The Mediterranean diet, which is rich in plant-based foods and those with anti-inflammatory properties, is associated with protection against Parkinsons disease, in addition to promoting general brain and whole body health. At our assisted living and memory care communities, our award-winning dining program is modeled after dietary patterns found in the Mediterranean region.
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Other Personal Health Factors
Poor Sleeping Patterns: The seniors with Parkinsons disease will have difficulties sleeping. Such patterns include sleeping at daytime instead of the night time, getting up earlier than usual, and frequently awakening at night. The seniors may also depict a sleep behavior disorder related to rapid eye movement, when their brains activity does not relax even when they are sleeping. Such issues are solvable by the assisted living facilitys caregivers understanding why the elderly adult may be experiencing challenges with sleeping patterns, and helping mitigate those concerns.
Bladder Problems: The seniors will find it difficult to urinate or to be able to hold urine. The assisted living facilitys caregivers will support with incontinence and bladder challenges and constipation.
Constipation: The elderly suffering from Parkinsons disease will have a slower digestive tract, leading to the development of constipation cases.
Changes in Blood Pressure: The seniors will experience some levels of dizziness or lightheadedness when standing poise. A blood pressure drop may lead to orthostatic hypotension. The assisted living homes caregivers will continuously monitor the elderlys blood pressure and will alert the seniors doctor if there are concerning blood pressure results.
Sexual Dysfunction: The seniors affected by the disease will have little or no desire for sexual encounters. As such, they must receive the proper health care to support with sexual dysfunction.
Medicaid / Hcbs Waivers
Under Medicaid, some family members can be paid as caregivers.
Nursing Home CareHome and Community Based ServicesPCA / PCS Programs
PCA stands for Personal Care Assistance or Personal Care Attendant and PCS for Personal Care Services. These are regular Medicaid programs that will pay a caregiver to come to ones home and provide personal care such as assistance with the activities of daily living An especially attractive element of these programs is the fact that often times, the paid caregiver can be someone familiar to the individual with Parkinsons. Friends and certain family members can be hired as paid caregivers. The downside of PCA / PCS programs are that the hourly wage that caregivers receive is very low and this is an optional Medicaid benefit. This means not every state offers this option as part of their regular Medicaid programs. A list of states which do offer PCS can be found here. Be aware that this list is not exhaustive and if one does not see their state listed, they should also inquire with their state Medicaid office if such a program is available in their state.
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Walker Methodist Parkinson’s Care Expertise
Each persons experience with Parkinsons disease is unique. That’s why we have an interdisciplinary approach to managing patient care that involves connecting with a residents medical and physical therapy teams.
Proven treatment methods are used by our staff regularly through our exercise programs and timely medication delivery.
Our communities partner with the Struthers Parkinsons Care Network, a leading authority in the treatment of Parkinson’s Disease. Through this partnership, our staff is continually receiving ongoing support and training on the latest advances in Parkinsons care treatment.
Fall Prevention In Parkinsons Assisted Retirement Communities
Assisted living residences that specialize in taking care of Parkinsons disease patients usually put in place the necessary modifications that prevent aging individuals from falling as they go about their daily activities. They design their residences to have open pathways with no obstacles so that inhabitants who use walkers, canes, or wheelchairs can move around with ease. Many communities also include grab bars beside tubs, sinks and toilets so that occupants are safe and do not trip or fall.
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Secure Surroundings And Memory Support
Find out if the community has a secure neighborhood. Hallucinations and delusions are a side effect of some Parkinsons medications.
Loss of memory can also be a symptom in later stages. Bethesda Hawthorne Place has a secure memory support living option that can provide increased security for those who are experiencing such challenges.
Parkinsons Facilities Offer Multidisciplinary Approach To Care
Assisted living retirement communities dealing with Parkinsons disease care understand that the patients need a different approach to care. A majority feature different interventions to help the aging individuals.
These are put in place to complement medications that the patients are taking, helping them to feel better. Patients usually have access to different medical experts who assist with managing care. Members of the Parkinsons care team can include:
- Nursing staff including aides and licensed nurses
- Counselors, psychologists, or psychiatrists
All the professionals work hand in hand to make the lives of the patients a lot easier. Some even plan ahead to anticipate some of the issues or problems that their patients may experience to ensure that they do not affect the elder in a way that they cannot handle.
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