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…
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.