Witnessing a parent becoming subject to dementia is one of the hardest things to face as an adult child. Roles are reversed as the former caretakers become dependent on their children; their disability a constant reminder that they won’t be around forever. How adult children cope with an elderly parent’s dementia will very much depend on the type of relationship they had.

The generalised term ‘dementia’ covers a range of medical conditions cause by abnormal brain changes and include Alzheimer’s Disease. Unfortunately, these changes in the brain trigger a decline in cognitive abilities, which may eventually become severe enough to impair the quality of life and independent functioning.

Signs of dementia can vary with some cognitive and psychological symptoms presenting themselves as:

  • Increasing confusion
  • Personality and/or behaviour changes
  • Short-term memory issues
  • Inability to concentrate
  • Keeping track of valuable possessions
  • Forgetting to prepare meals or eat
  • Forgetting to pay bills
  • Forgetting about appointments
  • Getting lost on an everyday walk or drive
  • Apathy or depression
  • Difficulty with motor skills
  • Problems with reasoning
  • Inappropriate behaviour
  • Paranoia
  • Agitation
  • Hallucinations

Whether the adult children are the primary caregivers or not, this journey is an emotional roller coaster. Both the parent with dementia and the adult children will feel a range of conflicting emotions, depending on the type of day the parent had. Resentment, anger, sadness, guilt and confusion are but a few of these emotions, and learning to handle and deal with them is challenging and emotional in itself.

Recognising the Behaviour

As a parent goes in and out of confusion during a state of dementia, they may become irritable, belligerent and attempt to manipulate those close to them. Recognising these behaviours is the beginning of being able to defuse potentially undue and upsetting behaviour.

“I don’t want to eat that!” or hurtful statements that lash out at the caregiver are often an expression of anger. Confusion may be exhibited with mixing up people or statements like, “Why am I here?”, “This isn’t my home.” Poor judgement is often displayed in statements such as “You/somebody stole my …..”. Repeating statements or tasks and hoarding are also signs of poor judgement, while manipulation is often exhibited through inventing truths such as “You never visit me” when you visit them every day.

Handling Aggression

Often, aggression has its foundation in fear, and the key is to try and identify the cause of the fear. Talking calmly and providing a light touch may calm some elderly parents, but aggravate others. Sometimes, they may simply need a bit of space, and the worst thing to do would be to engage in an argument or forcibly hold onto someone.

Handling Confusion

The American Psychological Association recommends remaining calm and supportive during interactions with parents who have dementia – no matter how difficult. The Association also strongly suggests not taking the parent’s confusion personally. This is very difficult, as during the affected parent’s confusion, they may often forget that the carer is their child, and this is a wound that cuts deeply. However, it’s important to remember that under different circumstances, they would never forget their child or treat them in such a manner.

Use photos, alarms, to-do lists, post-it pads or any other suitable tools – depending on the level of dementia, to help simplify the communication. The adult child will need to learn to figure out the reasons for their parent’s confusion and provide an answer that will make the parent feel calm and safe.

Handling Poor Judgement

As brain cells deteriorate, so too does the ability to perform a normal judgement. In moments of clarity, this can cause a lot of embarrassment for the dementia patient. Subtlety is required, in terms of listening and working together to correct an issue. It may also be helpful to try and break down a routine into simple steps together. Avoid any response that the parent can see as accusatory or doubting their ability to handle daily life. This will escalate into defensiveness and possibly anger.

Handling Manipulation

Dementia may lead to a parent being unable to distinguish between telling the truth and a lie. The adult child may find this incredibly difficult to handle, but it is worth remembering that manipulation has its roots in trying to gain trust, seize control or find security. Under these circumstances, it is important for the adult child to try to determine what their parent’s need is and work with them to find the right solution.

Heated arguments, accusations or providing examples of past poor behaviour or judgements will do no good. As a caregiver, the adult child will need to learn to separate their parent’s current behaviour from the person, and not bear grudges.

Tips For Caregivers

However, the caregiver needs to remain aware of their own emotional needs and seek counselling or support whenever necessary. Caregiving is extremely draining and can cause undue physical, mental and emotional stress.

It is vital for the caregiver to take a break from time to time and allow someone else to take over the care for a while. This break will allow the caregiver to attend to their own physical and mental well-being, while being able to do things that they enjoy and escape from reality for a time. Family, friends and even outside resources are all possible extensions of the care team. Professional caregivers who provide in-home help ranging from a few hours a week to full-time live-in positions can also be considered, although this does come at a cost.

Face-to-face talks with trusted friends, family members or even a therapist can be good to reduce care-giver stress levels.

Physical exercise is vital – if only for a short walk, and so is good nutrition. Both of these contribute to an improvement in mood and general well-being. Yoga, deep breathing or meditation are good alternatives to physical exercise, if time is short.

Choosing which battles to engage in with an elderly parent will also reduce a lot of agitation and stress on both sides. Sometimes a small misperception is easier glossed over than corrected, but a perception about reality may need to be addressed. At the end of the day, the adult child will need to place themselves in their parent’s shoes and determine how they would want to be treated.

It is imperative to remember that in South Africa, there is no legally enduring power of attorney. Thus, if the patient has given a family member or a friend a power of attorney to act on his/her behalf, this power of attorney falls away if the patient’s mental capacity diminishes below the legal threshold. Should this person continue to act in terms of the power of attorney, their actions could amount to fraud if they appreciated the wrongfulness of their actions.” Read more… https://sonjasmith-funerals.co.za/powers-of-attorney-vs-curatorship/

References:

  1. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013. Accessed March 2021
  2. Strategies for Coping With Caregiver Stress. AgingCare. https://www.agingcare.com/articles/strategies-for-coping-with-caregiver-stress-135916.htm. July 2020