Living With Someone Who Has Dementia

Discovering that someone in your life has dementia can be an overwhelming and difficult experience, which can lead to a variety of feelings like sadness, anger, or fear.  At the same time, it can sometimes be a relief to know the root cause of the symptoms a loved one has been experiencing.  The most important thing to realize is that the changes are a result of the disease and no one is at fault.  

Understanding the symptoms of dementia is important in helping to manage some of the challenges dementia creates. This knowledge will help to maintain the highest quality of life for the caregiver and loved one.

Understanding the Symptoms

In addition to the impairments in mental abilities, there are a number of psychological and behavioural symptoms that arise from dementia.  People with dementia often experience sudden mood swings, such as depressive states or feelings of apathy.  Depression is very common and can be a result of receiving the diagnosis, feelings of social isolation, or fatigue.  

It is important to know if a person experienced depression before the onset of dementia.  Depression can make the symptoms of dementia worse and cause increased anxiety, confusion, and forgetfulness.  If a loved one is experiencing mood swings, try to encourage activities that they enjoy.  In particular, focus on making the person feel valued and respected, as people with dementia may have a low sense of self-worth.  Do not expect too much from them and set realistic expectations, otherwise they may feel frustrated and discouraged.  

Wandering is a common symptom of Alzheimer’s and other dementias, and can happen at any stage of the disease (although more commonly in the middle to later stages).  A person may wander because they are agitated from over-stimulation or medication, they may be hungry, seeking relief from boredom or think they have to go to work or take care of their children.  

It is important to find the root causes for wandering – check with a doctor to see if there are medications that are less likely to cause confusion; keep a diary of when and where the wandering is occurring to identify patterns; or consider purchasing alarms that go off when a door or window has been opened.  Notify neighbours, local businesses, the RCMP or a local police department if a loved one has a tendency to wander, and consider registering them with the Safely Home program.  Safely Home is a nationwide program developed by the Alzheimer Society of Canada in partnership with the Royal Canadian Mounted Police. Once a person is registered, vital information is stored confidentially on a police database and can be accessed by police anywhere in Canada. The Alzheimer Society will issue an identification bracelet, identification cards, and will update the database as often as they are provided by the caregivers or registered member.

Setting a Routine

We all have our daily routines, whether it’s sipping a cup of coffee every morning while reading the paper or enjoying a favourite walk around the neighbourhood.  Daily activities such as dressing, bathing, and eating can form a familiar pattern.  Establishing routines around these activities helps the person with dementia know what to expect and helps him or her to continue doing things independently.  

Reminders, such as notes on the fridge with reminders to eat, bathe, or take on another activity will help ingrain routines.  Visual cues are recommended if he or she does not understand words.  Cues such as placing a tooth brush on the counter as a reminder to brush, or laying out clothes for the day will make these tasks easier to remember.

It is important to gauge how much help is required for a person with dementia. Sometimes the person will need help but will insist on doing it independently. Resist completing the task for him or her as it can be discouraging and make the task harder to do in the future.  Completing tasks together with a friend or loved one with dementia helps him or her to feel more in control and more involved. Remember to be patient, be encouraging, and try to maintain your sense of humour.

For a complete list of tips to make routines simpler, check the Alzheimer's Society of UK's maintaining everyday skills webpage.

Sleep Troubles

Sleep disorders are common in people with dementia, and these problems affect everyone in the household.  Someone with dementia may wake up more frequently than normal and may also have a tougher time falling back to sleep.  When awake, the person may wander, call out, or generally be restless.  At times, someone with dementia might sleep more during the day and may eventually not be able to sleep during the night.  In extreme cases this can lead to a complete reversal of his or her sleep pattern, and a period of restlessness and agitation in the late afternoon or early evening referred to as “sundowning.”  Other medical conditions, such as depression or sleep apnea, can also contribute to these sleep issues.

There are a variety of medical and non-medical treatments for sleep disturbances. Non medication approaches can include getting regular exercise and avoiding substances like alcohol, nicotine, or caffeine.  Make sure that the bedroom is a comfortable temperature and that daytime clothing is out of sight, so that it does not provide a trigger to get dressed. Avoid administering medications that may interrupt sleep before bedtime, such as cholinesterase inhibitors.  If a loved one with dementia does wake up, encourage him or her to get out of bed and do something quiet like read or listen to relaxing music.  

Medications to treat sleep problems are only recommended on a short term basis; they do not appear to improve quality of sleep in older adults, and can often produce negative side effects like increased chance of falls and other health risks. Make sure to consult with a doctor and ask lots of questions about the medications available, any potential interactions with other medications, and the benefits and risks associated with the prescription sleep aids.

Communicating With a Loved One

Engaging in meaningful interactions contributes to maintaining the quality of life for persons with dementia.  This can be challenging, however, as the dementia progresses and communication becomes more difficult.  Common issues are being unable to find the right words, losing a train of thought, or having trouble understanding what others are saying. In the early stages of dementia, there are several methods available to minimize frustration.  Avoid interruptions as doing so can cause confusion and distress, avoid asking questions that require good memory, give the person time to respond, and limit distractions as much as possible.

As dementia advances, there are some extra precautions to consider.  In later stages of dementia, feelings of frustration, fear, or confusion can sometimes provoke a person with dementia to act aggressively.  It is important to communicate using non-threatening body language, smiling often, and taking a “gentle” approach. Avoid surprises by approaching a person with dementia face-to-face, identify yourself clearly, and avoid making sudden movements.  Ask simple questions and use simple sentences to avoid confusing the person, and avoid being vague.  

For more tips, visit the Alzheimer’s Society of BC’s section on communication and dementia.

Caring For Yourself

One of the most important ways to care for someone with dementia is to take proper care of yourself.  Caregivers are better prepared to provide effective care and support if they can acknowledge and address their own needs.  Caregiver stress can sneak up and contribute to poor personal health and stress-related illnesses.  There are many physical, psychological, and behavioural symptoms that indicate signs of caregiver stress, including:

  • Muscle tension
  • Headaches
  • Lack of motivation
  • Inability to relax 
  • Irritability
  • Inability to focus
  • Depression
  • Loss of self esteem

It is normal to feel stress from time to time, but it becomes a concern when the stress continues day after day.  Caregivers often ignore the signs of stress because they feel there is no alternative, however there are many programs available to help.  Seeking help before stress becomes unbearable is important. Setting realistic caregiving standards and accepting that there are limitations to what one person can do on their own can help reduce stress.  

Family or friends will be happy to lend a hand to help a caregiver manage stress.  In the early phases of dementia, consider seeking Home Support services to assist with personal grooming, bathing, and meal preparation. Home Support visits allow caregivers the freedom to visit friends, run errands, or tend to their personal needs.  Caregivers who feel overly angry, depressed, or anxious, may wish to speak with a doctor, counsellor, or to visit a caregiver support group to ask for help.  

For more information about being a family caregiver, please see our Caregivers' Corner section or contact the Family Caregivers’ Network Society at 250 384 0408.

At some point, a loved one’s needs may become too great for caregiving in their home environment. A professional facility that offers 24 hour care such as Licensed Dementia Housing or Residential Care can provide a secure, supportive environment. Monitoring is done by nursing staff and professionals who are trained to care for people with dementia.  The Housing Options section provides more information on appropriate housing options.