A holistic approach to multiple long-term conditions

One of the great myths around dementia is that it exists in isolation. If every person with dementia was only living with dementia and no other conditions, and they weren't at more risk of developing other conditions during the course of their dementia, then care and support would be infinitely more straightforward. The reality, however, is very different.

The description 'multiple long-term conditions' is relatively new terminology, and the knowledge around how to manage multiple long-term conditions isn't comprehensive. We don't know enough about the interactions between different conditions, or indeed how the associated polypharmacy (where a person is taking multiple medications) is going to affect each individual now and in the future.

Some conditions are explicitly linked with specific forms of dementia, a classic example being the association between vascular problems (IE: high blood pressure, heart disease and stroke) and vascular dementia. More generally, there have been many headlines written linking diabetes with dementia, and for people with a learning disability and dementia, the risk of epilepsy is increased.

There is so much more to this multiple condition landscape though, and a person who is living with dementia could quite easily be living with many other conditions that aren't specifically linked to their dementia but add additional layers of complexity, medication and even danger into their lives. Examples would include asthma, arthritis, ME, osteoporosis, eczema (and other skin conditions), coeliac disease and the many different cancers. Never forget also the numerous individuals who live with chronic pain, given that we know pain is very poorly recognized and treated for people with dementia. 

As a person ages they are also at more risk of hearing loss and sight loss. Macular degeneration, for example, can leave an older person blind. Coping with that type of sensory loss when an individual has dementia is inevitably going to make adjusting to losing your sight considerably more difficult, and likewise will make living with dementia much more complex and potentially lead to even more exclusion and loneliness. Equally, if joints like knees and hips begin to wear out and need replacing, that can also be very difficult for a person with dementia in terms of their ability to consent to an operation and successfully complete the long-term rehab that’s required.

Dementia can also lead to the development of other conditions, either though the progression of a person’s dementia or because they haven’t received optimum care – examples include: incontinence, dysphagia (swallowing problems), pressure sores (pressure ulcers), dehydration, malnutrition and the many circumstances that can lead to temporary or permanent immobility.

Equally, whilst being focused on the different physical conditions that a person with dementia can develop, it's important to remember that there are many mental health conditions that can live alongside dementia, and indeed sometimes be mistaken for dementia. Two of the most common are depression and delirium.

Yet despite all of the links that can be made very logically between multiple long-term conditions we are not good at treating people holistically. The NHS is largely organized to treat individual conditions, but as our population ages and more people live with multiple long-term conditions the need for that holistic model of care will only grow.

Worryingly then, I've heard of huge difficulties in providing care and support to people who are living with diabetes and dementia. These are two of the most common long-term conditions in the UK today, and the numbers of people living with both are likely to increase, particularly with obesity levels rising. Mismanagement of diabetes can have life-threatening consequences, and just because a person has managed to keep their diabetes under-control prior to developing dementia is no guarantee that they will be able to in the future as dementia complicates their landscape.

The challenges of caring for people who are living with dementia alongside other conditions are huge. A person can forget why they need to take certain medications, avoid particular foods or drinks or participate in certain tests, all of which can adversely affect the management of conditions that they live with alongside dementia.

One of the great mantras of my work has always been that a person with dementia will not be able to manage their dementia alone long-term. This is an even more prudent comment when you consider the other conditions a person may have that they require a family carer, alongside health and social care professionals, to help manage and support.

Only by treating and caring for a person in a holistic way throughout their entire life with dementia can we truly hope to meet the aspiration of enabling them to living well with dementia. Whole-person care, as part of the more widely recognized person-centred care model, is the only way forward. Expanding that to relationship-centred care will also enable carers and families to be seen as partners in care and receive the support that they need too.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Please note: In 2015 the NICE/SCIE 'National Collaborating Centre for Social Care' will publish guidance on the Social Care of Older People with Multiple Long-Term Conditions. Find out more here.

Five-a-day to keep dementia away?

Fish pie - Brain food?

One of the things I am most frequently asked is how do you prevent getting dementia? People who have seen how this disease eventually ravages a person would do anything to avoid getting it, and those who have no first-hand experience, but then hear about my father’s physical and mental decline, are generally keen to avoid developing dementia.

Sadly there is no magic solution to prevent getting this disease. The healthiest and most physically and mentally active can still develop some form of dementia during their lives. My father is a prime example of this: he was a very active, hard-working man with a healthy outdoor lifestyle, who very rarely smoked his pipe and only occasionally enjoyed alcohol. Prior to developing dementia he was not over-weight, and had a healthy diet with lots of fruit and vegetables.

The tipping point, in my father’s case, was retirement. His previously busy life as a farmer suddenly stopped; the adjustment coincided with him losing interest in some of his hobbies and his life became more sedentary. The huge mental upheaval of no longer being a working man took its toll, and where his life had previously been about the dawn-till-dusk responsibilities and expectations of tending his animals, he was suddenly as free as a bird. Sadly, however, he never found his wings within this new existence.

Very gradually the type of vascular dementia known as multi-infarct dementia (which is caused by a series of small strokes), set in. These strokes were so tiny that for a long time dad never reported any change in how he felt, even though the strokes had begun to wreak havoc in his brain, and by the time symptoms of what we now know was dad’s dementia were very obvious, damage had occurred, and would continue to for many years before he finally had a diagnosis.

Other relatives in dad’s care home also reported that their loved ones had led healthy and active lives prior to developing dementia, so is there any answer to the question of how to avoid the big D?

Given my interest and research into this subject over many years, and the expert advice, studies and tips I see on a daily basis as part of my job, I would love to report that there is a fail-safe way to avoid developing dementia. To date this has not been found though, and however well people can live with this disease, and I truly believe they can with personalised, therapeutic care in community settings that value, support and embrace them as a person, there will obviously never be a substitute for prevention.

I am not medically trained, but I absorb all the information available and one of the most powerful messages is the one reminding us that what is good for the heart is also good for the brain. I am a great believer in fresh, wholesome food, rich in fruit and vegetables, low in dairy and with meat and fish in moderation. In short, the key to our food and drink intake seems to be about maintaining a good 20% acid/80% alkaline balance.

I avoid processed, ready prepared, or take away meals, always cook from raw ingredients (including staple items like bread), and never touch anything with additives in it. I would rather have a teaspoon of raw cane sugar than anything with so much as a particle of artificial sweetener in it. In fact, in all three of my father’s care homes, where they offered residents squash (laden with artificial sweeteners) throughout the day, we banned them from feeding this to my father and brought him in pure fruit smoothies instead. We firmly believe that the nutrition within those drinks (especially considering that he could eat very few fruits raw due to his swallowing problems), helped his body to recover from the dozens of chest and bladder infections that he endured during the last few years of his life, proving what I wrote about here, that good nutrition is vital to not only preventing dementia but helping those already living with it to have a better quality of life.

I exercise as much as I can (I could always do better), am a big believer in natural (non-chemical) skincare, get as much rest and relaxation as my schedule will allow, and try to keep a healthy work/life balance. If giving the brain a good workout is as beneficial as we are lead to believe, then mine certainly gets a daily dose of that due to my job, and I have no desire to retire, which in the case of my generation is probably just as well! I have never smoked, rarely drink, never touch Coca Cola or the like, and confess to being addicted to water. Wherever possible I also source alternatives to pharmaceutical preparations, something I think most pharmaceutical companies would prefer isn’t encouraged. The only thing I do struggle to influence is the pollution in the atmosphere, which I would be the first to admit is very bad for you.

When my father was initially diagnosed with dementia, we sought the advice of one of the leading old-age psychiatrists treating him to find out her view on what could be done to prevent dementia. She recommended a ginkgo biloba supplement, while other advice I have read more recently suggests supplementing with B vitamins can help to keep the brain healthy. There are literally hundreds of studies out there suggesting positive associations between good brain health and different supplements or foods. What to believe is always the main problem, but my feeling on all things is generally that moderation is the key.

Granted we all have our own choices to make, our own lives to lead and face the consequences of our actions as a result. Whether mine or my family’s choices will make it any less likely that we will develop dementia only time will tell, but I firmly believe that anything that keeps you healthier generally is at least a step in the right direction.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook