Ed i to r ia l

Dementia – too little, too late?

It is with regret that one has to return to this topic

which has featured significantly in this journal over

the years. A recent report has raised significant is-

sues relating to this cohort of the population with

regard to the provision of care, the cost of that care

and also who will provide for or even pay for it. The

timescale of this problem has now become all the

more acute and not for the want of groups working

with these individuals and their carers having

raised these problems many times over the last few

years. Just because it is a difficult and time con-

suming health issue does not mean that it should

be put to one side in the hope that a simple solution

will appear. Even if a means of prevention were

discovered tomorrow or that the symptoms could

be significantly alleviated, a large number of older

people with the disorder would still remain.

It is also sad that as dementia is not a ‘high

profile’ disorder, it does not attract the same level

of interest in research support as health issues that

affect other population cohorts. However, to state

the facts as they now exist- we are all living longer

and in the UK, one in eight over 65 years and one

in five over 80 years will suffer with some form of

dementia. Many of these individuals will end their

lives in care homes as their spouses, family or carers

will no longer have the capability, capacity or the

stamina to cope with the 24/7 demands on their

time. Only those of us who have been through

these experiences can testify to the heartbreak of

seeing the breakdown, deterioration and loss of

dignity to our parents or partners, the difficulties in

coping with communication, feeding, bathing,

dressing, protecting from harm, incontinence or

even simple tasks such as getting to do the shop-

ping or just having a break from the relentless

pressure of trying to do ones best. If you talk to

carers there is often a feeling of guilt as at times

they just want the ‘problem’ to go away and get on

with their own lives, but……… Maybe a solution is

to try and place the people who control the purse

strings into these residential or nursing homes so

they can experience at first-hand the growing

problem and that one of the residents could easily

be them in a few years time. It is a choice society

has to make but unfortunately it is likely nothing

will be done until matters are at breaking point.

It has recently been reported in Scotland that out

of a population of just over five million, there are

71,000 people with dementia and this is estimated

to increase to 127,000 by 2031. The cost of caring

for these individuals was found to be £1.7 billion in

2007 and the average cost per year to care per

individual was found to be £25,472. In the UK it

will cost £27 billion per year by 2018 which is

estimated would be £6 billion higher if it were not

for the unpaid support of carers. To put this cost

into context, this amount of money is more than

the combined amount for cancer and heart disease

with regards to care. It is estimated that in Scotland

alone, the total cost for dementia care will be £2.9

billion by 2031. At present, in an average 900 bed

hospital, approximately 150 of those beds will be

occupied by patients with some form of dementia.

One of the saddest facts is that there are over

16,000 people with dementia who are under the

age of 65 years.

The National End of Life Care Intelligence Net-

work report (2010) has predicted that in England,

the population over the age of 75 years could in-

crease to 7.2 million and that those over 90 years

will increase from 0.4 million to 1.2 million by

2033 (Office for National Statistics). One of the

reasons for these changes is the declining death

rates shown by a fall of 51% in males and 43% in

females between 1968 and 2008. As everyone

already knows the life expectancy in the UK for

men has increased to 77.7 years and for females to

81.9 years. An interesting fact that is becoming

apparent is that although there are more females in

the oldest age groups (214 to 100), by 2033 it has

been projected that this relationship will be 138

females to 100 males. Another way of looking at

these figures is to consider when people die and the

largest number of deaths now occurs in people 80–

89 years of age, with nearly 20% of all deaths in

people aged 90 years and over. It has been pre-

dicted by Gomes and Higginson (2008) that the

proportion of people dying aged 85 years and over

will increase from 32% in 2003 to 44% in 2030.

There is just no escaping the fact that there will be

very large numbers of older people in 20 years time

and they will have particular demands on society

that will be expensive and may be difficult to

achieve.

Another section of this report also deals with the

causes of death in people over 75 years of age. They

state that in 2006–2008, 35% of deaths were from

cardiovascular disease, 22% from cancer, 16%

from respiratory disease and the remainder from

‘other causes’. When considering where these

people wished to die, over 90% of those with

� 2010 The Author

Journal compilation � 2010 The Gerodontology Society and John Wiley & Sons A/S, Gerodontology 2010; 27: 249–250 249

cancer passed away in a hospice compared to 40%

with cardiovascular disease dying at home. In the

same group of patients, there were more deaths in

the most deprived groups, as one might expect and

that was greater in the youngest group of the

people studied, the 75–79 year olds and also in

females. It is also interesting to note that this was

from respiratory disease.

A report entitled Deaths in Older Adults in

England (2010) stated that dementia was one of the

top 10 causes of deaths in both sexes in people aged

80 years and over and as the number of people

entering this group was increasing there was likely

to be a concomitant increase in the number of

people with some form of dementia. As has been

previously reported by Dementia UK, this amounts

to a population prevalence of 1.2% or 613,661

individuals at present, but this will increase to

1.8% or 1,054,621 by 2035. If this looked in more

detail, the prevalence per 100,000 of late onset

dementia for the overall population rises from 2.9

at 70–74 years to 32.5 in those over 95 years. They

also state that this increase is purely due to demo-

graphic changes in the population of England. Of

the 4,339,000 recorded deaths in England between

2001 and 2009, 15% or 631,078 included Alzhei-

mer’s disease, dementia or senility on the death

certificates. In addition 11% or 70,365 had more

than one of these conditions mentioned as a cause

of death. In this group, the most common cause of

death was dementia (47%), followed by senility

(35%) and then Alzheimer’s disease (18%), with

the greatest rise being in dementia over the period

from 2001 to 2009. Between 2007 and 2009, more

females had dementia listed as being implicated in

their death than males (71% to 29%) with females

over the age of 85 years being the largest group.

As commented earlier it is significant to under-

stand and appreciate where these people might

wish to die or in some instances where there is little

choice. For the majority of those with dementia,

Alzheimer’s disease and senility, the place of death

is a nursing home (31%), followed by an old peo-

ple’s home (28%) with approximately 2% in a

hospice or elsewhere. Only 8% die in the comfort

of their own homes. Why is this latter figure so

low? Carers often have to deal with situations

where their partner or relative behaves in an

aggressive often perplexing manner which they

have never had to deal with before. Part of this can

arise as the person with dementia does not inter-

pret what they are seeing or hearing correctly

leading to a whole range of misunderstandings and

misinterpretations with enormous consequences

for the carer. Carers will say that unless you really

love the person, caring will lead to resentment and

one might as well stop right then.

‘What is needed is will and determination. The first

step is to talk openly about dementia’

Sir Terry Pratchett OBE (2010)

James P Newton

Editor

� 2010 The Author

250 Journal compilation � 2010 The Gerodontology Society and John Wiley & Sons A/S, Gerodontology 2010; 27: 249–250

250 Editorial