How do we care for our loved ones with dementia?

As human beings, we're hardwired for interpersonal connection and yearn for care from close others in times of need.  For many of us, our ties to our loved ones mean the world to us, and imagining life without them would be emotionally painful and inconceivable.  It had been found that most individuals on their deathbed, do not seek more recognition, or money, but wish for those close to them to be by their side.  However, when one of our close ones begin to suffer a dementing process, it presents a situation akin to being robbed of someone that you love - all of a sudden, you're faced with having to deal with losing that person, their memories, their sanity, their relationship with you, .....and sometimes, bit by bit everyday.

If you are reading this, this is not a post about what you should or should not do from a technical point of view.  Otherwise, do a Google search and you might find some general articles that might suffice.  This post is crafted not just for those seeking for a bit of information, but for those of us who have been through the trenches and felt the emotional insecurities of living with and caring for a loved one with dementia.  There may be a way, ... an approach, that may assist us sail through the tides and navigate the storm of caring for that special someone.

"I Have Dementia, But I'm Still Me"

I argue that Bowlby's Attachment Theory may be used to uncover the emotional meaning of behavioural responses to loss and abandonment in people with dementia.  It had been suggested in 2010 that "attachment behaviour" can be construed as a normal response of humans in times of extreme distress, illness and loss, and can be even more marked in the presence of cognitive impairment where there is reduced ability to adequately express emotion.  For the sake of brevity, you need to read, Attachment in Adulthood (2nd Edition) by Mario Mikulincer and Philip Shaver, for a thorough and elegant way of understanding Attachment and its concepts.

Bowlby (1979) emphasised that attachment behaviour is especially evident in times of ill health or loss and that this becomes more frequent with ageing.  This has been researched and supported by multiple studies in the last decade, as there has been growing interest in care-giving relationships with older people.  The concept of attachment in older people was found to be:

  1. A need for "proximity" to close others
  2. Keeping to one or more preferred others
  3. Protest following involuntary and perceived permanent separation from a preferred other
  4. Need for the presence of a "secure base" (someone deemed to be safe, reliable and trustworthy)

The challenge comes when trying to interpret what our loved ones are trying to express to us, when what we see is the presence of cognitive decline and impairment - this might be the inability to adequately express emotions, reducing interactions to more "primitive" responses, and that the person thus will seek a secure base (aka an "attachment figure").  It had been proposed that this may not represent a "regression" to the "infantile dependence", but rather the activation of attachment needs that had previously not been activated.  So it doesn't matter if our loved one has Creutzfeldt-Jakob Disease (CJD), vascular dementia, or Alzheimer's Disease (AD) , or other variants.  As long as it is a dementia syndrome and viewed to be a neurological illness, these individuals are still human beings with the capacity for desiring closeness and attachment in times of distress, illness, loss and their inability to express their emotions.

When someone experiences dementia, it is sufficient to induce or trigger off our attachment behaviours in response to stress.  Bereavement has been identified as the major stressor in terms of mental and physical health and has been shown that insecure attachment places individuals at risk of a complex grief reaction six months after bereavement.  Thus, that close one of ours could well be experiencing complicated grief that encompasses a wide variety of symptoms including chronic and disruptive yearning; detachment; numbness; despair; and social dysfunction (See my article written about Q&A: Dealing with Grief and Loss).  Based on years of research and clinical experience, Parkes (1964, 1970, 2006) recommends that avoidant individuals need assistance with expressing feelings about loss, whilst those who are preoccupied (anxious/ambivalent), cannot stop grieving and need help with restructuring their view of self in order to recover their coping capacity.  Maybe as a caregiver, we could assist them by knowing a little bit about their attachment behaviours.

"Okay, so what??"

What we know is that individuals' attachment styles can impact each other.  So as a caregiver, it might be useful for us to get a sense of our own styles of attachment, as it has been shown to impact on the quality of care we provide to our dementing kin.  "Secure" carers are able to identify the underlying emotional needs of their patients, whatever their attachment style, and respond flexibly to them.  Whereas, "insecurely attached" carers are more likely to focus on overt behavioural expressions of their patients (e.g., howling, rocking).  As a result, what we might notice is that the avoidant carer would tend to withdraw from their loved one, while the anxiously attached will become over-involved - so, what kind of carer do you identify with?

We also know for a fact that people with dementia experience fear and anxiety being moved from familiar to unfamiliar environments, as well as being surrounded by people who are strangers.  It was found that the mental condition of the person with dementia deteriorated when they were distressed and afraid of being abandoned.  This was despite providing top-level care as the person with dementia still hated being there!

It was also found that people with dementia of the Alzheimer type (AD) still respond to their illness even after their 'illness-insight' (i.e., loss of knowledge about their illness, disorientation) has disappeared.  It had been proposed that the dementia sufferer experiences a chronic trauma related to separation, loss, powerlessness, displacement and homelessness.  Also, there is evidence that people with CJD type dementia retain a degree of awareness up to very near the time of death and family members have been distressed by healthcare professionals' disbelief or disregard of the awareness state of the person with CJD.  Bowlby emphasised that attachment behaviour activation is highest during the phases of greatest dependency within the life cycle.  Thus, experiencing severe neurological changes such as is experienced in CJD, plus approaching death are situations of high dependency and potential danger to trigger the attachment system is extremely high.  

So, based on what we know from the research and understanding about how our loved ones with dementia may be experiencing their neuro-psychological changes, it is important for us to develop a sensitive understanding of emotional responses to loss in people with severe illness and dementia.  Specifically, as argued, acquiring knowledge of a theory like attachment, could help carers interpret behaviours such as following and parental fixation, within an attachment framework and react more appropriately to them.  This may assist to lessen the struggle of carers to understand their behaviours and emotional impact it makes on them.  It is also well worth considering how reactions to perceived abandonment, fear of abandonment and familiar figures and objects, when viewed from an attachment perspective, could help us carers to respond to their needs for security rather than react to overt behaviours.  And this would reduce distress more effectively.

Though this post is not a comprehensive dissection of what to do per se, we do suggest that carers be exposed to or be more informed about attachment theory and its application to caring for dementia patients.  As suggested by UK experts on Dementia Studies, de Vries and McChrystal (2010), carers may benefit from being trained in:

  • the recognition of attachment behaviours in people deprived of their cognitive capacity and the ability to communicate verbally
  • identification of patterns of secure and insecure attachment in those they care for
  • reflection on carers' own pattern of attachment and its impact on their quality of care provided

This would not only allow us to appreciate, and be more empathic, as well as interpret our loved ones' behaviours with a contextualised view, leading to increased warmth, and sensitive care rendered to them.  The result is that us carers would be enabled to contain the emotional impact of caring, develop greater confidence in our skills, and increase satisfaction with our relationships with those we care about.

Check out Cory Chen's (2009) work for more on this subject matter:

Dynamics of Intergenerational Caregiving : A Study of Attachment and Expressed Emotion amongChildren Caring for Parents with Dementia