Home and Community Care Services for People with Parkinson’s and Carepartners
A strong support network is crucial for anyone touched by Parkinson’s (PD); however, it can be challenging for spouses, family, and/or friends to cope with taking on caring duties for their loved one living with the disease. To ease the burden for carepartners/caregivers and people with PD, there are many services available across the province to support those with progressive conditions in living their lives to the fullest.
Home and community care services exist to support those who may have limited independence due to chronic healthcare conditions, as well as to provide respite to family and friends who have taken on caregiving roles. These services can be accessed in the community, through adult day services, in residential care or hospice facilities, or at home (HealthLink BC).
It is important for people with PD to know their options and how to access them, even in the early stages of disease progression. For example, you may find value in home supports, like assistance with cleaning, home repairs, or meal preparation, which can save you time and help you conserve your energy for other tasks. If transportation is a challenge for you, some nurses, doctors, dentists, and other healthcare professionals can make home visits, and pharmacies may be able to arrange medication deliveries. Services like these can be instrumental in supporting your independence and self-management abilities by allowing you the flexibility to focus on what matters most to you.
Carepartners can also benefit greatly from additional support. Having access to home and community care services can allow you to maintain your relationship outside of the caregiving situation by enabling you to spend more time together on other activities, like hobbies or travelling. By relieving carepartners of duties that pertain to symptom and medication management, or other medical needs, they can also become empowered to take on new kinds of caring roles. Carepartners can be strong advocates for the needs of people with Parkinson’s — an important role in the PD community. Providing their loved one with PD with additional support also allows the carepartner greater independence, and time for work, socializing, and self-care activities.
The most common and cost-effective options for home and community care can be accessed through your local health authority. Most publicly-funded services are managed by the government, but many private companies also offer their services at a reduced cost through partnerships with health authorities. If cost is a priority for you, keep in mind that high demand for subsidized programs may mean a longer wait and stricter eligibility criteria for access to services. In this case, many community and not-for-profit organizations also offer solutions for those facing barriers to accessing home and community care services through health authorities.
Public Services
Community nursing, rehabilitation, adult day services, home support, caregiver respite, and assisted living can all be accessed through your health authority. To arrange for care, you can contact the home and community care office in your area, and request a needs assessment. Healthcare professionals, including doctors, nurses, pharmacists, and social workers, can also make referrals on your behalf (HealthLink BC).
Needs assessments are conducted by healthcare professionals to determine an individual’s eligibility for services, and, where appropriate, to discuss a potential care plan. The healthcare professional in charge of your assessment will seek to understand your healthcare situation, and your needs, values, and priorities. Based on this, they will help determine what services best suit your situation, when and for how long you may need these services, and the potential cost of care. Many people with Parkinson’s disease may be eligible to receive subsidies for home and community care services, so your needs assessment will include an evaluation of your financial situation to determine your eligibility. In this case, you should be prepared to provide your income information, pension cheque stubs, and/or recent tax returns.
Public services are limited, and so are provided to those whose healthcare needs are most urgent. “Urgency criteria” include the overall condition of the individual’s health, the availability of caregivers and community supports, vulnerability to abuse, neglect or self-neglect, and length of time waiting for an assessment (HealthLink BC). Those who are found to be in the most need, and at the highest levels of risk, are deemed to have the most urgent cases, and will have priority access to the appropriate home and community care services.
It is important to remember that you have a right to consent to any service offered to you by your local health authority. Your needs assessment is the perfect opportunity to ask questions and ensure that you are fully informed before making a decision to access the services recommended to you.
If you are found to be eligible for services, a healthcare professional will work with you, your family, and your carepartners to create a flexible care plan. They will also discuss your status of priority, and how long you may expect to wait for access to services. If your situation is not considered urgent, the healthcare professional on your case will refer you to other services that may be helpful in the meantime, and discuss self-management strategies for you and your carepartners/family.
If you are interested in finding out more about the home health services that can be made available to you, call your local health authority’s Home and Community Care office:
Fraser Health | www.fraserhealth.ca | 604-953-4965
Interior Health | www.interiorhealth.ca | 250-469-7070
Island Health | www.islandhealth.ca | 250-388-2273
Northern Health | www.northernhealth.ca | 250-565-2649
Vancouver Coastal Health | www.vch.ca | 604-263-7377
Private and Non-Profit Services
Many prefer to access home and community care services through private companies. If you are ineligible for public services, or want immediate and flexible access, private services can provide you with care based on your needs and priorities. Similarly to public services, private home care, assisted living, or nursing services will pair you with a case manager who will help you build a care plan. Private services can also include meal delivery, personal care, housekeeping, and caregiver respite. In many cases, eligibility criteria are lower, and services can be accessed on-demand. Some examples include:
- Nurse Next Door offers home care services including companionship, nursing care, meal preparation, personal care, transportation, and caregiver relief. The company matches each client with a caregiver who matches their needs and personality, and services can be accessed 24/7. | www.nursenextdoor.com
- Bayshore HealthCare is one of the largest home and community care services in Canada. They provide medical and non-medical home healthcare, as well as specialized nursing, physiotherapy, occupational therapy, pharmaceutical, and other services, which can be accessed both privately and through health authorities. | www.bayshore.ca
- Silver Valet Dental Care is an on-site oral health service offering preventative and restorative care for those who may not be able to visit a traditional dental office. Treatment is provided in fully-equipped and accessible clinic vans. | www.silverdental.ca
Some non-profit organizations offer free or low-cost services, which are most often volunteer-led. In some cases, eligibility criteria may apply, and services may be reserved for vulnerable communities, low-income families, or those who cannot access care through a health authority. However, most communities will have flexible options, and referrals can be given through your local home and community care office. Options include:
- Better at Home is a United Way program that supports seniors with activities of daily living through various services offered throughout the province. Volunteers may assist with many activities, including transportation, light housekeeping, friendly visiting, yard work, or grocery shopping. | www.betterathome.ca
- Care BC runs respite care services for seniors and individuals with newly-acquired disabilities, as well as the low-cost Meals-on-Wheels meal delivery program. | www.carebc.ca
Assisted Living
For those who are still largely independent, but may need longer-term support with activities of daily living like meal preparation and household chores, assisted living facilities can be a valuable option. As symptoms advance, this option may become a necessity to ensure needs are met without caregivers experiencing burnout.
Assisted living residences provide holistic care in a safe and comfortable environment, and an aroundthe- clock emergency response system. Alongside medical and personal care, these residences also support seniors through activity programming and opportunities for socialization.
Although sometimes stigmatized as restrictive and/or degrading, assisted living facilities exist to enhance independence by reducing isolation and risk of harm, and relieving some of the responsibility of self-management. It also allows carepartners/ caregivers the opportunity to refocus on their relationship with their loved one, whether as a spouse, family member, child, or friend.
The piece below, reprinted from our Viewpoints archives, offers an important perspective on assisted living, and how carepartners can cope with this transition.
From our Archives: Care Giving After Placement
Viewpoints, Summer 2002
The possibility that placement in a care facility will become necessary, especially if the care recipient has a degenerative condition, is an obstacle which may seem insurmountable to many family caregivers. The decision to place an individual into the care of a facility or institution poses what may be considered the ultimate negative choice for caregivers. This decision may provoke stress and is surrounded by conflicting values. A caregiver may need to accept that he/she can no longer meet the needs of the care recipient or that the situation is beyond his/her control. This may prompt feelings of guilt (e.g., for abandoning the care recipient or feelings of failure at caregiving) or anger at oneself, one’s family or the care recipient for “causing” the situation in the first place. Although the actual deciding factor may differ from family to family (e.g., lack of recognition of family members, incontinence), ultimately the balance of needs between the care recipient (e.g., nursing care, safety issues) and the caregiver (e.g., health, well-being) is tipped and placement becomes yet another necessary transition in the ongoing caring relationship.
As with many transitions, adjustments must be made and challenges overcome. After placement, a caregiver does not give up her/his role but remains involved in new and different ways. The pressure of being “on call” all of the time and the physically draining efforts of providing care are likely to be relieved by placement. The new challenges faced by the caregiver centre around finding ways to become an active member of the healthcare team and participate in planning care. Family caregivers bring a unique, historical, and intimate understanding of the person that can greatly assist staff in understanding how to meet the individual’s needs.
Placement often provides increased opportunities for social and recreational activities for both the patient and the caregiver. Although placement may allow for the physical and social care needs to be better met, family and friends continue to be the ones most able to reach the emotional needs of the afflicted individual. Through interactions with staff, involvement in facility programs, and monitoring of care provided, the caregiver’s role is extended into new frontiers. This shift in responsibilities from full-time provider of care to visitor, advocate, and facilitator also allows the caregiver an opportunity to return to some previous activities, spend relaxed time with close friends, or start new projects.
There is no denying that the decision to place the care of a loved one in the hands of another is difficult and pivotal. The consequences of placement pose new challenges to be overcome in terms of shifting roles and adjusting to losses (e.g., separation, companionship). Think about the issue of placement before a crisis. Ponder, discuss, and prepare for placement with assistance of family members, friends, support groups, clergy, or counsellors. These challenges should not be faced alone.
By Holly Tuokko, Psychologist, Elderly Outreach Services, Victoria. Reprinted with permission from the Transmitter, a publication of the Victoria Epilepsy and Parkinson’s Centre (HeadWay).
This content was published in the Summer 2019 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.