What Dementia/Alzheimer’s caregiver needs to know

People with dementia from conditions such as Alzheimer’s and related diseases have a progressive biological brain disorder that makes it more and more difficult for them to remember things, think clearly, communicate with others, and take care of themselves. In addition, dementia can cause mood swings and even change a person’s personality and behaviour.

Providing care that yields positive outcomes for both the person living with Alzheimer’s/dementia and the caregiver is very important and challenging. To help, we provide a few things every Alzheimer’s/dementia caregiver must know.

Obtain the necessary help and support

Essentially, professional caregivers and other healthcare workers shouldn’t provide dementia care in isolation, but instead, must use each other as a resource of knowledge, problem solving assistance, and emotional support. Caregivers should have a method to communicate with his/her team members about the challenge in order to obtain support and to discover a solution. The dementia management team should include the Occupational, Speech and/or Physical Therapist, the physician, the nurse and others involved in the care of the resident/client.

Learn how to deliver dementia appropriate stage care

To enhance functional independence and emotional well-being, the caregiver must understand the dementia stages and how to provide compensatory care. At each stage, there is a certain amount of compensation that needs to occur. At the more advanced dementia stages, there is more compensation and assist needed. This is like the fact that a parent needs to provide more care and adaptation for a younger child.

Learn Dementia Capable Communication

The caregiver must understand how to communicate with the person with Alzheimer’s/dementia. Simple communication modifications are necessary to increase understanding such as:

• Wait for a response
• Take a complex situation and make it simple by breaking it into one step directions 
• Use visual or hand over hand cues with words

Learn Dementia Capable Behavior Management:

The caregiver must know how to reduce the prevalence of negative behaviors. This begins with knowing that most negative behaviors expressed by a person with Alzheimer’s/dementia have a reason or trigger and that behavior is most often simply a communication of an unmet need. Typical reasons for a negative behavior may be unmanaged pain, loss of control, fear, or boredom. The caregiver must have the ability to observe the situation and behavior to try to discover the trigger.

Learn to Accept what is, celebrate the moments, and know that you are making a difference

Often, caregivers struggle to find the value and meaning of their interactions, care, and relationship. In other words, if the person with Alzheimer’s/dementia is not able to communicate “normally,” can’t remember what happened an hour ago, or can’t engage in activity as they once could, then the caregivers struggle to find the purpose and value of the interaction or activity. It shouldn’t diminish the immense importance of the activity and interaction with the elder.

A positive, in-the-moment perspective must envelop every care situation. Examples:

• It is true a person with Alzheimer’s/dementia may reach a dementia stage in which they don’t remember visitors, but it doesn’t mean the moments spent during the visit weren’t special and therefore valuable to creating quality of life.
• It is true that at some point a person with Alzheimer’s/dementia may not be able to play a dice game with the same skill and expertise they once had, but it doesn’t mean they wouldn’t enjoy sitting at a table hearing the familiar sound of the dice rolling, or throwing the dice while others clap and encourage. It is the social and activity experience that matters, not winning the game.

There is a fulfilling, rich relationship that can occur and be maintained between a person living with Alzheimer’s/ dementia and their caregivers. Caregivers can’t care for their loved ones or their clients at the expense of themselves, but must instead seek out help, support and guidance so they never do it alone.