The Dementia Care Journey (revisited)

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When I read about the “Building Dementia Pathways” conference yesterday it sparked my memory about a blog I wrote some time ago titled “The Dementia Care Journey”.

I didn’t realise how long ago it was written!

However, what struck me most about the original blog is that the ideas and proposals are even more relevant today than back then. Terry Pratchett was even further ahead with his famous quote (pictured above).

With over fours experience at the dementia coalface under our belt, in which time we’ve successfully supported people diagnosed and their carers, I think we’ve earned the right to make a positive contribution to the conversation on how to improve dementia lives from diagnosis to passing.

I don’t have an “ology” to my name or letters behind it. However, the evidence gathered from our golfers, their carers (the hidden victims) as well as family members puts me in a very privileged position to be able to offer so many practical & life-changing solutions to the dementia crisis facing society.

We all know that the current dementia health and support systems are not fit for purpose.

However, there’s no point blaming each other. All our time, energy and focus must be concentrated on fast-tracking the concept of providing a person-centred, compassionate, respectful & rewarding dementia care pathway for families living with this devastating disease.

With no cure in sight, the urgency for a better journey is growing every day.

To use the same analogy, the current dementia services are like our transport networks on Christmas Eve with heavy snow. A nightmare to navigate with no light at the end of the tunnel!

Let’s make a start on a brighter future by engaging with people at the dementia coalface who can help transform so many lives with their invaluable contribution.

Oh.. by the way, I’ve attached the original blog written some time ago that resonates louder than ever. X

When a dementia diagnosis is finally confirmed it has a devastating impact on the whole family. The support families receive immediately after diagnosis varies from excellent to “here’s a leaflet with some people you can ring”. Overall the initial support is tragically inadequate and erratic across the UK.

Getting the right support in place during the initial hours and days after diagnosis is crucial. It can either lead to living well with dementia or a rapid downward spiral into despair and tragedy, with a sense that “life is over”. Unfortunately for many families the support received is woefully inadequate, inappropriate or in most cases non-existent.

Then you arrive at the stage in the current journey where dementia support services are irrelevant, sporadic, impersonal and patronising.

This has to change – and pretty quickly too.

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With no cure for the devastating disease of dementia, the only way we can support families effectively is by developing “Personalised Dementia Care Journeys” (PDCJ’s) for the whole family.

Before I explain how PDCJ’s work, here’s some of the responses social entrepreneurs like me get to our pioneering work and ideas.

What? You’re mad? How can we do that? It’s too complicated! It will never work! Where will the money come from?

I can see why so many social entrepreneurs give up as they continually face barriers and encounter “glass ceilings” and negative mind sets. I think it’s mainly down to the fear of change. However, major transformation in dementia care is exactly what’s required if we are to provide sufferers with the dignity and respect they deserve.

However, my message to fellow social pioneers is clear – “Keep doing the right things, for the right reason often enough and you’ll achieve your social dream”.

So back to Personal Dementia Care Journeys (PDCJ’s)….

The journey begins with an information gathering chat with the carer and their partner diagnosed with dementia about their life history, hobbies, special memories and life experiences. Getting information about friends and immediate family is important too. It also provides a better understanding of the support network already in place.

At the same time information is gathered about general health & wellbeing. It’s important to get the background of both people as meaningful support will be required for the sufferer and the carer.

Once completed a Combined Care Plan Combined Care Plans For Our Golden Generation can be drafted, discussed, tweaked and adopted by all stakeholders – most importantly the primary carer! The beauty of this approach is that everything is designed around the needs of the family – not the structures and systems of existing health & social care services.

This whole process should take no longer than one week (YES REALLY!!)

Once in place the combined care plan will provide meaningful therapy and services for the person diagnosed with dementia, respite support for the carer (when & where they need it) and relevant support/counselling for the whole family.

Regular updates and adjustments to the plan will be completed to ensure it remains relevant and supportive for the full duration of their dementia journey.

The beauty of the Personal Care Journey approach is that it supports families from the diagnosis stage to keeping life enjoyable, right the way through to the end of life. It’s underpinned with the cornerstone values of respect, dignity, compassion and human rights.

Towards the end of the journey additional support is provided – including care at home (as this is the best place for most dementia sufferers). And finally, in the “twilight of the journey” help is provided to find a SUITABLE care facility and prepare the family for the inevitability of their loved one passing.

Holding the hands of families living with dementia from the start of the dementia journey to its conclusion will transform lives.

It will limit the impact of this devastating disease on their future health & wellbeing, leaving them with positive memories to cherish about the dignity, respect and priceless support their family received during their dementia journey.

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Playing Golf Improves Lives

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For as long as golf has been played, the game has meant different things to different golfers. While a professional might brood about a round requiring 75 shots, an everyday hacker might take great delight in shooting an 18-hole score of 95.

Why the difference? It’s all about the mental approach. Golf is, superficially, a physical sport – there’s as much as seven miles of walking involved in playing 18 holes, plus the highly tuned action of swinging a club with a sound technique – yet the long-held viewpoint on the game is it is only 10 percent physical and 90 percent mental. The best professional golfers in the world are all capable of executing the wide array of shots necessary to compete at the highest level; what separates them lies in the six inches between their ears.

‘At One’ With Nature

Mentally, golf is beneficial in several key areas: for social interaction, for exercise, to aid concentration, and to spend time in natural surroundings. That intangible last point cannot be undersold. A University of Washington study on how outdoor activities surrounded by nature affect the mind found, among other things, that “the experience of nature helps to restore the mind from the mental fatigue of work or studies, contributing to improved work performance and satisfaction.”

Other findings included how green spaces provide necessary opportunities for physical activity, as exercise improves cognitive function, learning, and memory. Also, this salient point: “Outdoor activities can help alleviate symptoms of Alzheimer’s, dementia, stress, and depression, and improve cognitive function in those recently diagnosed with breast cancer”

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Developing a Healthy Addiction

Golf helps mentally in other ways, too. Rocker Alice Cooper turned to golf to overcome his various addictions and, in turn, found another, far healthier one. Playing as many as 36 holes a day created a welcome distraction for the “Godfather of Shock Rock,” whose game became so good, at one point he was only a breath behind playing at a pro level. “Some people turn to God, I turned to golf,” Cooper famously quips.

Post-traumatic stress disorder is a mental ailment commonly associated with returned armed forces personnel. Seeing the benefits of introducing sufferers to the golf course, the Professional Golfers Association of America has partnered with doctors and therapists in recent years to use the sport as a remedy. And the upsides are emphatic.

“Since implementing the game of golf into our programs, I’ve observed that some of the participants still desire to continue playing the game and developing their skill,” says recreation therapist Penny Miller. “Golf is used as a therapeutic treatment modality, to help patients restore, remediate, and rehabilitate to improve functioning and independence in life activities, as well as to help the patients integrate back into society.”

“We see patients presenting symptoms of their medical conditions to include: insomnia, lack of concentration, anxiety, and inability to form social relationships. The golf clinics that have been implemented over the past two years have involved about 30 patients. Golf is used as a vehicle to support patients psychosocially.”

“One of my concerns is that people say that this is just golf,” adds neuropsychologist Dr. Michael Hall. “It is not just golf, it is more than golf. Golf is a venue again to create a positive environment, positive experiences. Sometimes that is the only time I see that emotion. Granted, I am focused on problem areas, but it’s a big deal. It’s not something that shouldn’t be dismissed because it’s golf.”

In much the same vein, “Jim” is a golfer who goes by the poignant online name of “The Grateful Golfer” after launching a blog that played a role in assisting him to overcome cancer. He did so by focusing on improving his mental strength and “the positive aspects of golf, interacting with like-minded golfing fanatics, and to have a constructive exchange about all things golf.”

“Golf has helped me focus on the four pillars of wellness: healthy eating, moderate exercise, stress relief, and good quality sleep,” he writes.

Let’s Get Physical

The physical elements of playing 18 holes should not be glossed over. Golf works your gluteus maximus (butt), the pectoralis major (chest), latissimus dorsi (back), forearms, and core muscles. Plus, golf is one of the least injury-prone sports people play.

A study conducted by Neil Wolkodoff, the director of the Rose Center for Health and Sports Sciences in Colorado, ascertained that walking for a full round while carrying a golf bag burns 1,442 calories. Conversely, riding in a cart nearly halves that figure (822). Walking with a pull buggy burns 1,436 calories and walking with a caddie carrying the bag burns 1226 calories.

The same study added that burning 2,500 calories per week – so, less than two full rounds of golf played while walking – can greatly reduce the risk of heart disease, diabetes, and cancer. Yet perhaps the best news came from a Swedish study conducted by the Karolinska Institutet, which found golfers enjoyed a 40 percent lower death rate when accounting for other factors such as age, gender, and socioeconomic status. The Swedes determined the golf factor alone contributed to an extra five years of life expectancy.

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