Leah Bisiani: Improving the Lives of People Living with Dementia

In order to highlight the discussions that will take place at the upcoming 8th National Dementia Conference, we spoke with the Managing Director of Uplifting Dementia Leah Bisiani about working with people with dementia and the positive impact of doll therapy. In the 25 years that Leah has been involved in this space the treatment and condition of consumers has evolved immensely.

What led you to your current career path?

I began working in aged care during 1985 post my RN.1 training, in various 30–100 bed nursing home wards, packed with bed after bed of frail, malnourished older people with dementia, curled into permanent contractures, usually in the fetal position. Between their withered legs were dripping fetid rags, and festering gangrenous sores covered their skeletal bodies. The use of restraints such as shackles, were rampant and disgustingly accepted. The residents were just overmedicated shells.

Once you smell the odor of gross neglect it can never be forgotten.

The conditions were so archaic and cruel, I was appalled at the atrociousness of what I witnessed and had believed would be an environment of true care.

All I could see was horror, hell, and cruelty. It made me cringe with disgust, and demand answers as to how people could think this was acceptable.

It was so barbaric I could not stand by and condone this disgraceful ugly secret, hidden under the guise of aged care. The problem was it had become the norm.

Why didn’t anyone question these methods. Why did people not report this abuse? Why why why??? I was sickened, repulsed and dismayed.

Therefore, the catalyst to my crusade into dementia began at 22 years of age.

Once this passion started burning inside of me, I knew I had to make a difference. I recognized there had to be a better way.

I was obviously powerless as a junior nurse, hence I made the decision to do whatever was required to launch myself into a position of authority where I led by example, and could establish myself as an authority in the field.

I could visualize the steps required to create change, but knew it would take time within this conservative, evidence based industry. I however believed without a doubt, that it was worth the effort.

I envisioned this as a life journey, and so far, it has met that expectation.

Over the next 15 years I educated myself, working my way up the hierarchy by becoming more qualified, polished, experienced, published, and validated, which finally led to positions where I called the shots.

Then I could finally utilize this influence to start shifting the old archaic stereotypical philosophies of care and begin developing new uplifting values and beliefs.

This allowed me to finally give a voice to, and advocate for those who were crying out to be heard.

People living with dementia inspire me daily. When I enter their reality, it enables me to understand as best as I can, what courageous and inspirational people they are.

They live a life so much more difficult than ours, and despite our often-meagre attempts to enter that reality, they continue to prevail. This is true strength!

When I grasp life through their eyes, this inspires me constantly to be a better version of myself.

We are capable of making our dreams a reality, and inspiring others to believe in our dreams, thus creating transformation in ideologies and procedure.

If we have the courage of our convictions, we truly can lead the field by employing innovation and thinking outside the square.

Seeing the joy, the smiles, and the pleasure is my reward.

My passion continues to ignite from the energy these amazingly resilient and wonderful people show me by inviting me into their world to walk through this journey with them.

My motto is and has always been: “Be the change you want to see in the world” – Ghandi.

How did Uplifting Dementia begin?

It is up to us as care givers, to understand how confusing and often frightening the world/environment can become to someone with a cognitive impairment. There are many unfair assumptions made by people who are cognitively aware about people who live with dementia.

This type of labelling is negative not only to how we perceive people with dementia, but to how they perceive themselves.

We do not have the right to make these statements about people who have a progressive condition that affects their brain. They are still and always will be, ‘human beings’ in their own right, and just because their world is different from ours, does not mean they deserve any less in relation to understanding and care.

Stereotypes become part of how we think, how we believe others should act at a certain time of their life and how older persons should behave. When interacting with people living with dementia, we can make incorrect choices for them by permitting our biases to take preference, thereby misrepresenting their sense of personal and individual characteristics.

It could be assumed that many people living with dementia may, if they could communicate it, have the belief, trust, and faith in those caring for them, to continually persist in searching for fresh and innovative methods of creating preservation of ability, and enabling self-expression for them to live a life free of the constraints that society place upon people that are different.

Thus “Uplifting Dementia” was born.

I needed a greater platform to share the joy, and the success of my theories and research. My desire was to make a difference on a vaster scale than I first thought possible.

Next on the agenda was to expand into the community, thus cease restricting myself to just the residential aged care sector.

This was due to my belief that the people caring for people living with dementia require equal understanding and support, given the lack of ongoing guidance, advice and support.

Now I have such an enormous volume of opportunities, it has reinforced to me the benefit of taking the step into consulting and allowing my reputation to precede me.

It’s been the most harrowing, wonderful, exhausting, exhilarating journey, and I aim to keep running with it, to take this cause as far as I possibly can.
“Risk more than others think is safe

Care more than others think is wise

Dream ore than others think is practical

Expect more than others think is possible”.

Why doll therapy and what positive impact does it have on people living with dementia?

“Imagine for a moment, searching for a distinct space in the world— the harder you search for that space to connect your need for inclusion— the tougher and more confused it becomes. Those around you just don’t seem to enter your reality, or provide you with the joy of companionship you crave and desire— you feel utterly alone. All you feel is a sense of core suffering and misery— you withdraw into yourself. It is as if you have lost your humanity in the eyes of those who look through you”.

This is the experience of many in our care who live with dementia.

“An opportunity is presented to you to regenerate past relationships and to regain the space you hold in the world, with the assistance of those who care about maintaining your personhood. A doll is given to you as a gift and that faltering spark that keeps you alive begins to burn again. You embrace the doll and long term memories, like the scattered pieces of a jigsaw and it becomes your present. Delight, pleasure, enchantment, feelings of self-worth and attachment, as well as stimulation of long forgotten nurturing instincts precipitously flash through you”.

As professionals, our long-term experience of people living with dementia and their ever-changing reality is that they can feel completely alone unless we, as caregivers, establish links through the complex maze of fractured memories that make up a long-lived life. It is in the unravelling of these memories that enable us to participate in their journey and provide them with companionship and support to preserve their personhood.

This research project was aimed at unscrambling some of these links with the past through the use of doll therapy and emerged out of a minor thesis as part of a Master of Health Science – Aged Services program at Victoria University, Melbourne and followed by a published paper titled; Doll therapy: A therapeutic means to meet past attachment needs and diminish behaviors of concern in a person living with dementia – a case study approach.

The research was guided by the views of Killick and Allan, (2001), who reminded us that regeneration of past relationships through the use of complementary therapies, such as ‘doll therapy’, may be potentially useful in maintaining a fulfilling lifestyle for people with dementia. Other research also reminded us that people living with dementia have their present reality strongly linked to past memories.

There is also evidence that a person in the moderate-to-advanced stages of dementia will respond favorably to familiar attachments related to long term memories and this can then provide meaning to their present (Kitwood 1997).

Also utilized was Miesen’s (1992) expansion of Bowlby’s (1969) theories of attachment in children, where the author adapted this theory to people living with dementia; and suggested that those who cling to dolls and soft toys appear to be using these objects as a representation of the personal support that they yearn for. Failure to acknowledge and/or resolve these relationships is often exhibited in behavioral expression.

Following an extensive review of the literature, there appeared differing viewpoints on the controversial role of doll therapy. Hence, we were guided by the view that the way in which we evaluate whether doll therapy is suitable for people living with dementia, or not, should not be based on our preconceived assumptions; and to avoid judgment on what we think is right for us or on how we would feel if given a doll.

If a doll is of benefit to the lifestyle of a person living with dementia, does not distress that person emotionally, provides solace and joy, a sense of calm, improves communication, and reduces behavioral expression, then there is a place for doll therapy, to be examined as a form of therapeutic encounter (Bisiani, 2010).

How can doll therapy be implemented into care facilities?

This single case study may provide the impetus for aged care providers to develop an increased open-mindedness to therapeutic interventions that encourage positive ageing and wellbeing of people living with dementia. Kitwood (1997), believed we should not judge people living with dementia in relation to how we think an elderly person should behave. If we do so, then we are encouraging caregivers to become rigid in their ways of thinking, which does not follow the principles of person-centered care. It is crucial to meet individual needs, despite personal impressions, or attitudes to, the intervention or therapy.

As practitioners, many of us have encountered dolls in residential facilities. They are often seen in resident’s rooms on display or in a common area— cast aside in a chair, on top of a piano or upside down in a cardboard box-— a cheerless reminder of some past activity.

This study reinforced our view of doll therapy as a therapeutic encounter that respects the nature and meaning of that experience in a relationship of deferential reciprocity. The act of gifting the doll was central to this study. Like the giving of most gifts, this gift was carefully considered and planned with deference to the community including the participant, other residents, care staff and relatives. The gift enriched many lives in this facility. It is also a reminder to us that we cannot constrain ourselves and those we care for, by ignoring the simplest answers the responses of the people living with dementia are our answers.

The results provided substantial evidence to support the potential benefits of the use of doll therapy in reducing behavioral expression such as anxiety and agitation that may be associated with observed attachment needs of a person with dementia. Despite the controversy on this topic, doll therapy should be considered as one approach to further dementia care in light of this research.

It also supports other researchers’ views that, with care, doll therapy can be used assist some people living with dementia to retain the ability to better manage their emotions and interact more socially.

Further, the benefits of this research will, hopefully, encourage a change in attitude to one of the many alternative therapeutic ways of meeting the specific requirements of a person living with dementia. As professionals, we need to build upon this evidence to promote therapeutic interventions that demonstrate another valuable way forward in the provision of person-centered dementia care.

Are there any presentations at the National Dementia Conference that you are looking forward to seeing and why?

“Development of a targeted national dementia research and translation strategy because of the ICA”.

My interest here is to ascertain if a more standardized, quality approach has been developed to ensure people living with dementia and those caring for them are given the skills, direction and guidance required to ensure this journey is not one that is traumatic but one that is pleasurable and enriching.

“CogChamps – A model of implementing evidence-based care at the PAH”.

One of the areas I have found impacts dramatically on dementia is delirium. The other being depression.

Both exacerbate the symptomology and signs of dementia, masking the correct view of a person’s genuine presentation.

Hence, I have always reinforced the need to investigate, and resolve these issues prior to assessing a person living with dementia, given these conditions are resolvable.

At that point we gain a more accurate interpretation of the true presentation of the person, and can develop care plans that are specific and individualized as to their actual needs.

I am however, interested in majority of the presentations, given this is an area where we can all grow from each other’s experience. This growth ensures we continue to guarantee people living with dementia benefit from our increasing knowledge base and thus their quality of life can be maximized.

Life does not end because a person has dementia. It’s often our attitudes that create decline and rapid deterioration. Therefore, our changing attitudes can also reverse that sense of ill-being to one of wellbeing and balance can once again be restored to their lives. They deserve nothing less.

Leah Bisiani will be speaking at the 8th Annual National Dementia Conference. For more information, including our current agenda, please head to our website.