Dementia coaching program offers chance to live well

News Release
August 8, 2018 | Australia, Dementia coaching program offers chance to live well

Support available for Sydney residents diagnosed with dementia
A new University of Sydney trial offers coaching and peer support to help people newly diagnosed with dementia cope with their prognosis and stay active and involved in their lives and community.

“I want to try and help people see they can fight back…you can’t just give into it.”

Bobby Redman, Peer supporter living with dementia

Lead researcher Associate Professor Lee-Fay Low said the pilot study has the potential to fill a vital service gap with the latest research suggesting keeping the mind and body active could slow the progression of dementia.

“Following a dementia diagnosis many people withdraw from their friends and family for fear they will deteriorate quickly and can suffer immense grief or depression,” said Low, Associate Professor in Ageing and Health at the University of Sydney.

“There are over 400 000 Australians currently living with dementia and with a cure still some way off it’s essential that we help people with early dementia to live well.

“We hope that giving people the right support, tools and strategies from the onset could help achieve this.”

The Dementia Lifestyle Coach pilot study is a collaboration between the University’s Faculty of Health Sciences and Brain and Mind Centre.

Participants will receive 14 counselling and coaching sessions from a registered psychologist over a six-month period and will also have a regular phone or skype catch ups with a peer supporter who lives with dementia.


Retired psychologist Bobby Redman is one of the peer supporters involved in the study.

Photo of peer supporter Bobby Redman

Bobby was diagnosed with frontotemporal dementia two and half years ago at age 66 after she noticed problems remembering the names of close friends and an inability to find the right words to express herself.

“My story is a bit different because with my psychology background I knew something was definitely wrong – but a dementia diagnosis is still a shock for anyone,” said Bobby.

“And what’s probably hardest is that, like in my experience, many people with early dementia are just told to come back when things get worse or to get their things in order.

“But I’ve learnt that there are tools and strategies you can put in place to help manage the impact of dementia. Even simple things like using my phone to set daily reminders to drink water and stay hydrated.

“What I’d like to see is more clinicians trained to provide these strategies to people to help them overcome simple issues.

“I want to try and help people see they can fight back. I think that’s the key….you can’t just give into it.”

The pilot study will run over a 12-month period, with researchers aiming to assess the impact the coaching program has on participants’ mood, independence, activity levels and quality of life.

Participant information

The University of Sydney is trialling a counselling and coaching program for people living at home recently diagnosed with early dementia. To be eligible you must have received a diagnosis of early dementia within the past 6 months. Read more information about the Dementia lifestyle coaching study or contact Dr Annica Barcenilla on +61 2 9351 9837 or annica.barcenilla@sydney.edu.au

 

The Link between Hoarders, Brain Damage & the Research

In Asia, you would usually see a case about a hoarder which is a common reference for a person living in severe domestic squalor. In most cases volunteers would have gone in to help clean up the home only to have it return to the same steady state a few months after.

Image from Chinanew.com (Elderly resident in Qing Dao accumulates items that blocks the apartment entrance.)

With our high-rise living 2 recent cases caught my eye, a 78-year-old lady sleeping in a stairwell in Singapore for 3 months as a result of the clutter in her home and an apartment in Shanghai, whose entrance has been completely blocked as a result of a single resident’s collection of items.

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Image from The New paper (TNP, Singapore)

A lot of the time, these situations leave us confused, especially after a big clean up, they continue to build up and reside in unsanitary and highly dangerous living conditions. It is not uncommon for colleagues or friends to say that the individual was well articulated and seemed well presented. So why do they continue to live in conditions that endanger their lives and others?

In a study by Snowden et al. (2012), one in 700 elderly living alone in the community may be living in these conditions. Research by Lee et al. (2014) in Australia found that people living in squalor were mostly living with brain damage that is impacting their ability to accept that their living condition was highly unacceptable in society. To answer the question about the well-presented individual, their research have also found that most of these individuals score well on the Mini-Mental State Examination (MMSE) indicating a level of capacity resulting in the ability to remain well-spoken and presented individual.

Having helped out in some of these activities, it was and still is in hope; that a lot of the residents who were residing in these living conditions did not have the physical means to clean up their homes. For many of us living in high-rise apartments with our parents and children, a lot of us tend to turn a blind eye and only start to care when it begins to affect our living environments. The usual situation is when we start seeing a rise in the number of cockroaches, a bedbug infestation, or the smell of rotting garbage. By then it is too late.

In addition to the community, Sutherland and Macfarlene (2014), touches the inability of psychiatrists to view this as a psychiatric issue and yet psychiatrist are the key individuals that can assess and prescribe appropriate strategies.

Sutherland and Macfarlane (2014) advise that in these situations practitioners really only have 2 options.  To intervene against the wishes of the person in question or do nothing. People could argue that this is highly paternalistic, some may say prescriptive. However, when the situation may pose a risk of harm to the individual and the community living in these high-rise communities, can you really turn your back on the situation?

Some of us may risk inaction out of respect for the individual. We may not want our neighbours to “lose face”, we may want to be polite, to keep the peace or for some of us, we just haven’t had the time to look, and for a minority of us, we may not care.  to contact our local MP or town council for help; we are in fact abandoning these individuals as a society and putting everyone’s lives in jeopardy, their lives and our own. These environments are a huge fire hazard, in addition to the contributing unsanitary conditions when we allow bedbugs, cockroaches and other insects to spawn when we could have acted early and provided the right care for our neighbours and reduce the risk of harm to everyone.

“Our services should act in the best interests of the person where possible while bearing in mind the interests of others. When capacity is in doubt, decisions about intervention may be debatable. It may be easier to do nothing. Recognising our responsibilities, even if they distress us, is necessary. If we find the job impossible, it is important to refer to people or services who can take on the case (Snowdon, 2014, p682).”

These individuals are who may be found with diminished capacity may be able to be managed by services such as home help/care and other community services (Sutherland and Macfarlane, 2014). The researchers also suggest that in extreme cases, guardianship may e necessary. The person could be cared for in a residential home with clinical care such as an aged care home.

In the event that we may have seen such a situation, we should contact our local MP or town council for help. By remaining inactive, we are in fact abandoning these individuals as a society and putting everyone’s lives in jeopardy, their lives and our own. These environments are a huge fire hazard (Pending Road), in addition to the contributing unsanitary conditions when we allow bed bugs, cockroaches and other insects (Eunos Cockroach Infestation) to spawn when we could have acted early and provided the right care for our neighbours and reduce the risk of harm to everyone.

Video posted by Nur’Ashikin Fazlan Zainol on facebook.

By including the safety and lives of others in our daily lives, we include the safety of our family.

 

References:

Lee, S., Lewis, M., Leighton, D., Harris, B., Long, B., & Macfarlane, S. (n.d). Neuropsychological characteristics of people living in squalor. International Psychogeriatrics, 26(5), 837-844.

McDermott, S., Linahan, K., & Squires, B. J. (2009). Older People Living in Squalor: Ethical and Practical Dilemmas. Australian Social Work, 62(2), 245-257.

Snowdon, J., & Halliday, G. (2012). A study of severe domestic squalor: 173 cases referred to an old age psychiatry service. International Psychogeriatrics, 23(2), 308-314.

Snowdon, J., & Halliday, G. (2009). How and when to intervene in cases of severe domestic squalor. International Psychogeriatrics, 21(6), 996-1002.

Snowdon, J. (2014). Severe domestic squalor: Time to sort out the mess. Australian & New Zealand Journal Of Psychiatry, 48(7), 682.

Sutherland, A., & Macfarlane, S. (2014). Domestic squalor: Who should take responsibility?. The Australian And New Zealand Journal Of Psychiatry, 48(7), 690.

 

 

Memory Cafes: Working towards inclusion

No one person with dementia and their caregivers should be isolated, and a social program in the United Kingdom, America, some parts of Australia are doing just that. We all know that loneliness affects both the person with dementia and their caregivers. Studies have reported that isolation and loneliness can bring about lowered self-esteem, feeling of abandonment, and increase mortality rates, and these are but just some of the issues associated (Brotons & Marti 2003; Reijo et al. 2011; Goll et al. 2015). Even the UK Department of Health (2012) has recognised that loneliness is a major public issue and needs to be urgently addressed.

 

Just along the lines of government and major organisations, when one thinks Memory Cafe, we may have a schema of a 24-hour cafe with people running around to man the joint. Administrators and funders, I can imagine pinching themselves, great idea but what’s the cost? The gears will be moving in their heads thinking about all the capital involved and the manpower cost associated with it, not counting the overheads and getting the right people to be able to make coffee and run a cafe, followed by other operational issues of burnout, turnover manpower training and development.

This memory cafe is way ahead of the game. With a number of memory cafes popping up like peonies in full sun, this program only operates a few times a month depending on the cafe. It can be once a month or twice a month and time for an hour or more. It’s free for people living with cognitive impairment/dementia and their significant other, be it their spouse, partner, child or carer.

Just having a peek at the Facebook page of one of the memory cafes in America (Brown County: Click here to visit page), you can see images people sitting in small groups of eight working together and having fun with craft activities and in one post they even mentioned that they were putting together harvest recipes for a cookbook. Another photo has a heartwarming image of people sitting around, really relaxed and laid back enjoying Christmas carols performed by the NWTC choir.

photo-memory-grandma

It’s hard to find programs where both the person with dementia and their significant other can actually enjoy social activities. Most activity centres would boot the caregivers, expecting people to drop off the their loved one with dementia at the centre and leave. If you hang around, you might feel a bit out of place or in the way. Or a caregiver program where caregivers come together and the person with dementia gets allocated to an activities area.

It’s just great to see a program that is so warm and inclusive, where people can just come together and there’s no stigmatism, no funny looks, no barriers. You can share stories, ask questions and there’s no stigma, no judgemental looks, no nonsense. Everyone can just be themselves, enjoy a cuppa and have some fun. A program that provides an environment that supports movement and engagement, optimises helpful stimulation, creates a familiar social space for people to have the opportunity to be part of the community, allows people to be seen and to be part of something meaningful (Fleming et al. 2003).

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Isn’t this what life is about, just being able to kick back, have a cuppa and a laugh with friends.

Anyway hoping to see them catch on in Asia as well in the coffee shops and dim sum cafes.

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For more information about starting a memory cafe in your community, please refer to the links below.

UK: Memory Cafe

USA: Brown County Memory Cafe

Aus: Memory Lane Cafe


 

Reference:

Brotons M. and Marti P., 2003. Music therapy with Alzheimer’s patients and their family caregivers: a pilot project. Journal of Music Therapy, 40(2), pp.138-150.

Department of Health (2012) Caring for our future: reforming care and support. London: The Stationary Office. Retrieved fromhttps://www.gov.uk/government/publications/caring-for-our-future-reforming-care-and-support.

Fleming R, Bowles J. Units for the confused and disturbed elderly: Development, Design, Programmimg and Evaluation. Australian Journal on Ageing. 1987 November;6(4):25-8.

Fleming R, Forbes I, Bennett K. Adapting the ward for people with dementia. Sydney: NSW Department of Health; 2003.

Goll JC, Charlesworth G, Scior K, Stott J (2015) Barriers to Social Participation among Lonely Older Adults: The Influence of Social Fears and Identity. PLoS ONE 10(2): e0116664.

Reijo S. Tilvis, Venla Laitala, Pirkko E. Routasalo, and Kaisu H. Pitkälä, “Suffering from Loneliness Indicates Significant Mortality Risk of Older People,” Journal of Aging Research, vol. 2011, Article ID 534781, 5 pages,