Old couple walking while holding hands

Most challenging behaviors in dementia are mild or moderate and can be treated at home. Appropriate, non-pharmacological handling is usually sufficient and there is no need addressing to a physician or to specialized dementia care. Proper education is essential to deal with challenging behaviors at home. 

When a new behavioral symptom is observed or changes its character, it is very important to rule out a medical condition as a possible cause. Urinary tract infection, constipation, pain and other conditions, such as arthritis may be the cause of a challenging behavior. It is very important to visit a GP, not to miss such a diagnosis.

Proper observation and detailed recording of the behavior is also essential. What are the characteristics of the behavior? How often does it happen? What time of the day? Is the person with dementia alone or with others when the behavior appears? Is s/he easily reassured? How severe is the behavior and how easily does it resolve? Has the person eaten? Has s/he gone to the toilet? 

What can I do as a caregiver?

Let’s take a look at some key strategies for dealing with challenging behaviors:

  • Arm yourself with patience, no matter how difficult it is. Do not take it personally. It has nothing to do with you, nor does the patient want to bother you. It is common for challenging behaviors to be directed towards primary caregivers or others providing care. 
  • It is important to understand that patients’ suspicions and false accusations are caused by the disease and are not a reflection of them.
  • Try to listen to the person with dementia and understand their own reality. In fact, people with dementia have a different idea of ‘reality’ – or sense of what is really going on – from our own. Their own reality must not be disputed and cannot be fixed. If, for example, the person with dementia believes we are in 1987, we have no reason to correct him/her. They will not remember it anyway. They will only be upset.
  • Do not argue, do not try to convince them. Unfortunately, reasoning does not help with dementia. If they believe they are in their native village, it makes no sense to try to convince them that they are in the city. Respect their own idea of reality, without making fun of them.
  • Instead, reassure them. Make them feel safe and show that you care about what they tell you, that you take them seriously.
  • Change the topic of discussion or find an activity to keep them busy. You can tell them, “Yes, we will do what you say, but please I need to do something first and I need your help.”
  • If they keep repeating the same question, try to answer it each time without criticizing them. If you are tired, you can walk away and take some time for yourself.
  • If they lose objects, you could get duplicates or more of the items they are looking for and place them in different parts of the house (e.g. their watch or wallet).

How can I communicate with a dementia patient?

  • Regarding communication with the person who has dementia and exhibits challenging behaviors:
  • Use a calm and reassuring tone of voice. Use simple words, short sentences and ask one question at a time.
  • We always prefer a positive approach instead of a negative one (no “do not do it” but “let’s do something else, help me”).
  • Maintain eye contact
  • Approach the person from the front and not from behind
  • Avoid sudden movements and voices, they can be scared and get upset
  • Humor and laughter usually help
  • Reduce the stimuli of the environment that can distract them, turn down the bright lights and loud music, on the contrary relaxing music can help

Before resorting to medication, there must always have been previous non-pharmaceutical interventions.

However, in cases where the patient’s own safety or the caregiver’s safety is at risk or if despite proper handling, symptoms persist, medication may help.

Senior man standing beside senior woman on swing

The value of early cognitive assessment

Older adults’ relationship with cognitive examination and dementia screening remains complicated. The progressive nature of the disease and limited treatment options often lead older adults to forgo cognitive assessment until they feel they are facing serious cognitive issues which impact their daily life. It is true that often the early symptoms of dementia may go unnoticed and one should not underestimate the fear of getting tested for a disease that cannot effectively be cured. Until now the best option for older adults was to hope that they don’t develop dementia and wait for issues to appear before getting tested. Dementia experts however were growing tired of the “hope and wait” approach.

Not content with just diagnosing dementia and then trying to slow the disease progression, the global scientific community has led an effort to diagnose cognitive problems at an earlier stage, before a person develops dementia. Lately there has been a lot of discussion about mild cognitive impairment or MCI for short. But what is MCI? In essence it is a diagnosis that refers to the existence of cognitive problems beyond those expected due to age however it is not (yet) dementia. More importantly people with MCI can live autonomously and there is a good chance that their situation may be stabilized or even improved with targeted cognitive training activities. Furthermore intervention at the MCI stage is imperative as people with MCI are at a higher risk of progressing to dementia. In essence an MCI diagnosis is a call to action and an opportunity to avoid progression to dementia.

In order for this new approach to be effective though, older adults themselves must change their attitudes towards brain health. Awareness campaigns have highlighted the importance of prevention and regular testing for various diseases. Indeed when it comes to diseases like breast cancer we tend to be proactive instead of waiting for symptoms to appear. We should now apply that mentality to brain health and recognize that our brain is a complex instrument that needs to be monitored regularly as we enter old age. We are used to scheduling yearly blood tests and now it’s time we started scheduling yearly cognitive screening not just for dementia but also for milder cognitive issues such as MCI.

Nowadays we recognize that brain health is an issue that affects the whole of society therefore everyone should be involved in addressing it. Gone are the days of scientists working alone in dimly lit laboratories. If we want to defeat dementia we must step forward and take part in the struggle no matter if we are older adults, relatives or simply concerned citizens. A society-wide mentality shift can often be more effective than a thousand scientific articles and strengthening the ties between society and the scientific community can only lead to progress and better health for everyone.

What can I do?

  • As an older adult: Maintain an active and healthy lifestyle. Make sure you integrate an annual cognitive examination in your preventive healthcare schedule.
  • As a relative: Encourage your loved ones to examine their brain health yearly even if they feel healthy.
  • As an assisted living / nursing home owner: Offer a yearly cognitive examination service for your residents. Offer cognitive training / rehabilitation programs for those residents with cognitive problems.

Further resources

Senior woman with dementia sitting on a chair and her caregiver by the sea

Dementia is a chronic deteriorating condition, in which patients experience symptoms such as: cognitive and functional decline, behavioral problems, lack of insight, and personality change. During the course of the illness, the number and severity of symptoms increase and daily functioning and participation in social activities become increasingly difficult for dementia patients, which leads to them becoming more dependent on the care of others.

Usually family members or friends provide care to patients, acting as informal caregivers. Care provision can be a serious burden for caregivers and can have an adverse effect on their mental and physical health, particularly if care is provided frequently or for a prolonged period of time. The progressive and often unpredictable illness process seems to be challenging for caregivers. The burden of caregiving is not only associated with the provision of care. It is also associated with the fact that caregivers, who are often faced with multiple concurrent stressful events and extended constant stress, have to learn to cope with the various symptoms of the illness, both cognitive and behavioral.

“Caregiver burden” is a term that includes all the consequences of caring for a chronically ill patient: economic, social, physical and psychological. In particular, when compared to non-caregivers, caregivers of patients with dementia often experience psychological, behavioral, and physiological effects that can contribute to impaired immune system function. When compared to caregivers of patients with other chronic diseases, such as cancer, caregivers of patients with dementia experience greater burden. The same has been reported for depression and anxiety. Depressive symptoms are also common in caregivers of dementia patients. Rates of depression in caregivers of patients with dementia range, among studies, from 10,5% up to 83%. Caregivers’ burden and depression are highly associated, although their association remains complex. Thus, the burden that caregivers experience is considered to be a key component in dementia treatment.

Despite that, the majority of caregivers lacks support, has poor knowledge of available formal services, and has no guidance on how to plan ahead for the relative’s care needs. It has also been suggested that caregivers should develop effective coping strategies and receive professional support during the course of illness, which may improve their ability to handle the continuously changing conditions and increasing needs of the person with dementia.

Providing support to caregivers is, therefore, essential to promote their well-being and prevent serious caregiver burden. In line with that, numerous interventions have been implemented, aiming either at reducing the objective amount of care provided or at improving the caregiver’s well-being and coping skills via psychoeducational or supportive interventions, support groups, or multicomponent interventions.