What are the differences between dementia and Alzheimer's disease?
Why are relationships important in dementia care?
How can family members support one another when one member is living with AD?
What resources are available for families?
How does one access home care services?
What is the range of costs for typical services for persons with dementia?

What are the differences between dementia and Alzheimer's disease?

The term "dementia" refers to a syndrome, which is a collection of signs and symptoms. Dementia is the syndrome in which people have memory problems, as well as problems with other functions that the brain controls, such as language, or paying attention. These problems are acquired (as opposed to being present on a lifelong basis), are progressive, and become severe enough that they interfere with a person's ability to hold a job, or function the way they used to. The syndrome of dementia has many causes, but the most common cause is Alzheimer's disease. Alzheimer's disease can be distinguished from other dementias based on the fact that it is a relatively slow onset and progressive disease that affects multiple aspects of cognitive performance including memory, language, and personality. These changes often occur in the absence of significant impairments in regulating basic body functions and the ability to walk. Further information on Alzheimer's Disease can be found at these websites.

Why are relationships important in dementia care?

Relationships matter because Alzheimer's disease and related dementias are not easy to self-manage. Moreover, dementia care is inherently relational – the daily support people typically need should occur in a relationship that is trusted, respectful, and reassuring. People with dementia do well when their caregivers advocate with them (not just for them); family members need to support one another too as they contemplate what to do, manage care decisions, and relate to other care providers. Finally, formal care providers can offer the best care when they learn from family caregivers about what is and has been meaningful in the person's life; about the social history of the person with AD; about the family's learning needs; and about the supports and resources available to the family.

How can family members support one another when one member is living with AD?

Every family responds differently when a member is diagnosed with AD. Some members of the family emphasize the importance of planning ahead while others focus on the present. Both approaches are important and families are often encouraged to strike a balance between 'living one day at a time' and 'planning ahead.' Planning ahead may entail orienting yourself to the services available in your area, making decisions about power of attorney, and considering living arrangements for the future. Families and formal care providers are also encouraged to reflect on how they are engaged in three specific 'partnering processes' – contemplating action, managing care, and relating to others. Examining who among family and formal care providers are 'active' in each of these processes may help them to identify and secure necessary resources for dementia care.

Click here to learn more about these partnering processes.

What resources are available for families?

If/when the demands of caregiving become too much for family members, a family may need to look to formal care providers for assistance. This is particularly important in preventing families from 'burning out' unnecessarily. Resources are available in a variety of forms: home care service, social/recreation groups for people with AD, adult day programs, respite programs (designed to give family caregivers a break, ranging in duration from a few hours to overnight weekends), physiotherapy, personal support in the home, dieticians, support groups for family caregivers, support groups for people with AD, and education/information sessions. Veterans and their families should contact the Department of Veterans' Affairs to inquire about what services are covered; these may include home care, home making, day program, and respite services. Family caregivers are also encouraged to discuss with their loved one Power of Attorney considerations, which typically entail assigning medical and/or legal decision-making to a particular person(s).

How does one access home care services?

Each province and territory across Canada offers different home care services, both public and private. Becoming oriented then with community dementia care services located near you is essential, and families should consider contacting their local chapter of the Alzheimer Society to learn about the services available in your area. Consider too asking your family physician what community dementia care services s/he might refer you to. Typically, once a diagnosis of AD is received from a family doctor or specialist, you can arrange for a home care assessment by your local community care service coordinator (e.g. Community Care Access Centres in Ontario). Depending on the progression of the AD and on what other services are available to a family, one may be eligible for publicly provided home care and/or respite services. Private home care services are also available in most areas, and can be arranged by contacting an agency near you. It is recommended that you stay in regular contact with your family physician and/or geriatrician as well as your local care coordinator so that you can add to and update the assessment of your relative.

What is the range of costs for typical services for persons with dementia?

Publicly funded care services are provided at no cost, but it should be noted that the availability of these services is sometimes limited, depending on eligibility, disease progression, and public resources. Adult day programs often require a daily fee, ranging from $20 - $30 per day. Subsidies are sometimes available, depending on eligibility. Privately hired care services typically range from $15 - $25 / hour.