Caroline Grogan on Dementia & Dementia Friendly Communities

With one week to go until the 8th Annual National Dementia Conference, we spoke with Centacare’s S.H.A.R.E. The CareProgram Co-ordinator Caroline Grogan to discuss dementia in Australia and dementia friendly communities.

Dementia is currently the single greatest cause of disability in older Australians. How can our healthcare system better meet the needs of Australians of all ages living with dementia?

Personally I feel early diagnosis is needed, but with diagnosis there needs to be referrals and information both for the diagnosed person and their family. Getting a diagnosis can be a long struggle for families, with years of living with anxiety not knowing what is happening or what is next. Then upon diagnosis they are often sent away with no support system and what Kate Swaffer has defined as ‘prescribed disengagement’.

A cancer or stroke patient is immediately referred to specialist care and treatment. Why then is the same not offered for people living with dementia? The impact of stigma and historical injustices is still felt today in current care, which leaves the vulnerable more disempowered upon diagnosis.

I think Norman Doidge’s discoveries on neuroplasticity have a lot to offer this field towards having a rehabilitation model of care which enables rather than displaces and disconnects people from the roles, activities and community they are a part of. So the healthcare system in Australia needs to support people to live with symptoms which are presented as disabilities. This needs to start from appropriate and timely diagnosis and referral to support services that are flexible and perhaps differ from traditional age care services we have used in the past when diagnosis was primarily in the later stages of the condition.

We have a new cohort of professionals coming through universities now. I think if they are taught through specific units to be aware and consider the Dementia Enablement guide that has been created by people living with dementia and advocates, then there is hope for Australia’s system to be leading the change in offering holistic and empowering healthcare for people living with dementia, encompassing appropriate support for rising and varying disabilities.

At the National Dementia Conference you plan to discuss dementia friendly communities. How do these communities differ from other models of care?

In recent times the use of co-production within services actually links well with the principles of Dementia Friendly Communities. For at its centre is the need for people with dementia to be leading the initiative. Within Centacare we have been using co-production, which seeks to break down power imbalances and work in partnership with clients to deliver the most appropriate and directed care and support available. We have seen clients become more confident and empowered voicing new ideas and community activities they wish to be involved in. There is a learned helplessness, which can rise when people are not supported to make their own decisions, or when services are doing ‘for’ rather than doing ‘with’ people.

In saying this, I do understand that there are differing models of care. For instance, with all due respect, the Medical model heavily influences dementia care relating dementia as a medical condition. However, this model has the professionals as experts and can see patients as passive recipients. Thus it differs greatly from DFC where people living with dementia have active roles and are the leaders for the movement of community engagement and change.

Dementia can be an isolating experience. How can we better support and empower people living with dementia to maintain community links?

Indeed, people with dementia can lose friends, family members, work, and previous connections to social clubs/activities. The main reason for this is a lack of understanding about dementia and how others ‘should’ act or engage with people living with dementia.

Possible supports can be through DFC initiatives, like memory cafés. But I feel it is also valuable if you are personally patient, understanding and empathetic with people with dementia. Acknowledge the person, do not look past them but engage and see them. They are still the same person and every person wants to be accepted and loved. This does not just change overnight once someone is diagnosed. Social isolation has been recognised as being more harmful than not exercising and twice as harmful as obesity.

Each person has an inherent dignity and worth. It is a social justice issue when this is not respected and basic human rights to participate are neglected. To “toss” anyone aside is an injustice, especially if they are vulnerable. By creating DFC it also creates a culture which can enhance everyone’s lives where fear is replaced by care, isolation with connection, silence with voice, exclusion to inclusion.

As Pope Francis has shared: “A society without proximity, where gratuity and affection without compensation— between strangers as well — is disappearing, is a perverse society. The Church, faithful to the Word of God, cannot tolerate such degeneration. A Christian community in which proximity and gratuity are no longer considered indispensable is a society which would lose her soul. Where there is no honour for elders, there is no future for the young.”

March 4, 2015; General Audience, St. Peter’s.

 How can dementia organisations ensure that their services engage and stimulate people living with dementia?

Firstly, I do not think we should limit it to just ‘Dementia organisations’ but see it as everyone’s moral duty to have some level of awareness whether to engage or stimulate. Because with over 70% of people with dementia living in the community, there needs to be wider involvement beyond specific organisations who just treat dementia. For limiting the focus purely to dementia related organisations creates further reinforcement of segregation and isolation in communities. Rather, we should be asking, how can various entities like Churches, schools, pharmacies, bowls, sporting clubs all play a role?

Engagement and stimulation are two important areas for any individual. The best first step to supporting this is asking the person living with dementia what they enjoy doing, what they have done in the past. If they enjoy swimming, why can’t they continue to do so? What steps can be taken to facilitate this continued interest?

Indeed, to offer appropriate stimulation, the first important step is to ask the person for their preferences, lest they end up in a small group doing Sudoku when they have always hated maths.

A man with dementia who had always worked hard five days a week found himself increasingly bored. So we have supported him in volunteering in the community with Meals on Wheels so he feels valued with purpose again. Hence the relationship with local communal entities and partners like Meals on Wheels is key.

Encouraging new learnings is also of value. Facilitating skills building or even learning an instrument, if they enjoy music. One lady really loves fashion so when Centacare hosted a Mini Mother’s Day Fair as part of being a pilot site for co-production, I invited her to model local designer’s clothes. She was shocked yet over joyed to be a part of it, yet why shouldn’t she be? I think you have to be intuitive and flexible to various needs, discerning interests you want to encourage and support without setting people up to fail. Try to always be open to new creative opportunities that may arise in your community.

Alzheimers Australia has great Language guidelines to support respectful engagement with people living with dementia. I think the biggest lesson is treating people the way you wish to be treated. If you have that philosophy in any interaction with anyone, it does not matter if they have dementia or not, there is still that intrinsic respect for the individual, for their lived history, for their shared community. Then you will have a solid foundation to engage respectfully and intuitively with people living with dementia.

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

I am especially looking forward to Kate Swaffer. I have heard her speak a few times now. I think she is a truly inspiring, dedicated and moving speaker. I also enjoy her books!

I also look forward to the National Institute for Dementia Research, especially their sharing on strategies around assessment and diagnosis; intervention and treatment given its importance in practice within Australia’s healthcare system. Also, Tim Parry’s presentation on dementia and stigma, reframing dementia, oh and Judy Bartholomew about education because educating professionals is truly needed to become DFC.

Caroline will be presenting on dementia friendly communities at the 8th Annual National Dementia Conference. For more information, including our current agenda, please head to our website.