Jef Smith discusses the importance of monitoring the healthcare of service users with dementia.

Dementia has overtaken cancer as the great unmentionable among both the older generation and their younger relatives and carers. Conversations about health still generally omit problems like serious memory loss, occasional incidents of confusion, unexpected mood swings and similar danger signals. Despite major efforts at public education, these areas are much too scary for casual conversation.

This prompts another thought. If one had dementia, what chance would there be of getting across to someone in authority one’s concern about symptoms of other health conditions? There are a number of hurdles to be overcome starting with how to put into words what one wants to describe.

Having Alzheimer’s is so disrupting of personal communication that it can easily lead others to miss what the person is wanting to say and allow them to attribute everything that happens to the disease. This insidious process now has a name, diagnostic overshadowing, formally defined as the attribution of a person’s symptoms to their mental state when such symptoms should actually indicate the presence of a separate condition. Diagnostic overshadowing was first used in relation to people with learning disabilities, but it applies equally to anyone with health problems which they cannot readily communicate and which, therefore, get lost among concern for what others see as their overriding mental condition.

The first barrier to getting good healthcare to people with dementia, therefore, rests with those close to them. Receiving communications in such circumstances involve not just hearing what is said, but also developing a comprehensive openness to all sorts of bodily and behavioural language. Many people, even those in the late stages of dementia, retain the will to communicate their wellbeing or its opposite. Care workers, as well as family members and friends, need to be alert to such messages, especially when they relate to health needs.

Alzheimer’s Society study

Even with such sensitivity, the Alzheimer’s Society alleges that the health service is still treating many of the 280,000 people with dementia who live in care homes — surely a conservative estimate — like second-class citizens. In Fix Dementia Care: NHS and Care Homes, a study published last year based on a survey of 286 care home managers, it claimed that vital sources of support including continence advice, dentistry and other community-based services fall woefully short of dementia sufferers’ needs.

Some shocking examples of poor healthcare are quoted. One resident had to wait three months for continence products to be supplied. Another, with a broken collarbone, was prescribed pain relief medication over the phone. In a third instance, there was a whole year’s delay before physiotherapy following surgery was set up. Lack of appropriate mental health services resulted, in separate cases, in the emergency use of a Deprivation of Liberty Safeguard, having to be admitted to hospital inappropriately, and waiting for eight weeks for the necessary referral.

Once again, this report draws attention to the disgraceful — and unlawful — practice of GPs charging for providing residential homes with a primary care service. The providers’ organisation Care England, which worked with the Alzheimer’s Society on the study, has regularly drawn attention to the scandal of unfair retainer fees for services that should be treated as “core” under the General Medical Services contract, but to no avail. If anything, the situation appears to be getting worse; a 2012 Care Quality Commission study found that 10% of homes were paying for their GP surgeries to visit, but this new report suggests that figure has now more than doubled. The authors make another plea for the Government to clarify the GP contract and to close the loophole of GPs defining basic services to care homes as “enhanced” and thus meriting a fee.

Lack of mental health support

It is not only primary care services which are proving deficient; 45% of the managers in the survey thought that their residents with dementia lacked adequate access to mental health support. The NHS Constitution makes explicit promises in these areas which are clearly not being fulfilled. For example, apathy — used as a technical term for the persistent lack of interest or motivation — is experienced by less than 5% of older people generally but by half of those with dementia. There is little hard evidence about what treatments work for this condition, but recent research suggests that music therapy, group art therapy and cognitive stimulation may help. What chance is there for a resident being referred for any of those?

Depression is also more common among people with dementia but anyone with both dementia and depression is in much more than double jeopardy. Memory loss, confusion and withdrawn, well-known dementia symptoms, are all likely to be exacerbated by depression, and this in turn can lead to aggression, sleeping and eating difficulties, tearfulness and weight loss. Spotting and disentangling such a malign mix of symptoms requires skill of a high order in care staff and regular oversight by doctors or specialist mental health nurses. Even if the former is available, the latter is almost invariably missing.

Common physical illnesses

The relationship between physical and mental illness is of course complex, even more so for people with dementia. Urinary tract infections (UTIs), common among older people, more common among women than men, provide an illustrative example. A UTI can cause sudden and severe confusion in a person with dementia, but it is easy to attribute such behavioural change to the underlying mental condition so that the UTI remains unrecognised and thus untreated.

Somewhat similarly, people with dementia are at relatively high risk of developing pressure ulcers if their tendency to spend long periods sitting or lying in one position is not countered. Such cases therefore require scrupulous monitoring by staff. The danger is that a care home resident who suffers from dementia effectively sacrifices their right to be heard because they cannot describe what is bothering them, that is those around them have ceased to listen.

New evidence of the interrelationships of body and mind is constantly emerging. Over the last year, for example, research has suggested that drugs currently used to treat rheumatoid arthritis might have reduced the risk of developing dementia if they had been taken before the dementia manifested itself. Researchers are also busy on what exactly links dementia and diabetes. The incidence of diabetes is increasing alarmingly, but one positive outcome might be to reveal whether a diabetes drug already being used can act also as a treatment for Alzheimer’s disease. Clinical trials will not yield evidence quickly enough to benefit the current generation of care home residents; for the time being, homes’ staff again need to be aware that some people will suffer both diseases and that they both need medical attention.

Points for action by homes

Make sure that staff have the training, time and motivation to listen and watch out for information about changes in residents’ health.

Pursue all of your local health services — GPs, community services and mental health, as well as hospitals — to provide the level of support for residents with dementia which is promised under the NHS Constitution.

Be alert to new developments and information relating to the links between dementia and a range of physical and mental health conditions.

Last reviewed 21 August 2018