and implementation in Older People's Mental Health: From a carer’s
Clifford Greenhalgh, former member of RCPsych
Clifford Greenhalgh, a
former member of the College's Carers' Forum, discusses his
time as a carer for his wife Freda who suffered from Alzheimer’s
and the problems that she had during that time. Freda died in
Clifford believes that many of the
difficulties that Freda experienced could have been
alleviated if evidence-based practices had been used.
Involvement in a wide range of older
person’s mental health organisations has increased
Clifford's knowledge of the poor quality of the provision of
mental health care for this diverse group. Specific examples are
described of what can be done to improve the situation.
benefits of early diagnosis
Ther is evidence to show that early
diagnosis of dementia results in improved outcomes for the service
user. These include the optimum treatment being delivered to the
service user at the appropriate time.
How my wife’s dementia was diagnosed
Sme years before Freda received a
diagnosis, I expressed concerns to our GP about her mental health,
due to her increasing erratic and violent behaviour and
deteriorating memory. The GP said that confidentiality ethics
prevented him from raising the matter with her; he could only treat
her if she raised the matter herself. Freda at that time did
not acknowledge that she had any difficulties. Friends and family
became aware of the problem as they observed her abnormal
behaviour. The diagnosis of Alzheimer’s was eventually made at the
local hospital after Freda was admitted for a fractured hip.
How could the diagnosis have been made earlier?
An official diagnosis of dementia was not given for two years
after I had expressed concerns to our GP about Freda’s mental
health. Failure to acknowledge the onset of Alzheimer’s is probably
much more common than the professionals think. I have seen reports
that about 5% of people with Alzheimer’s are in denial. I doubt the
accuracy of this figure and think that it is probably much
It seems obvious to me that if the disease
could be observed at the hospital and was being noticed by friends
and family, it should have been possible for Freda to have
been given a diagnosis. She would have accepted that she
had a memory problem. If this term had been used by the GP, I
am sure that treatment could have commenced much earlier.
GPs skills in this area need to be
improved and ways must be found to reconcile the information given
by carers and patient confidentiality. There is a pilot scheme
in North East Wales which may help lead to earlier diagnosis. An
older person’s mental health nurse is attached to a doctor’s
surgery to provide assistance for the screening and treatment
of the early stages of mental illness. This is looking very
promising at the present time and may be better at getting
who don't acknowledge that they have a
mental illness, into the system.
The benefits of meaningful involvement of carers of
persons with dementia
It is generally accepted that the active
involvement of a willing and able carer, who knows the person with
dementia well, will improve the wellbeing of the person with
How much involvement was there in practice during
various stages of the illness?
- The years at home prior to
admission to an inpatient hospital ward
Before the admission to the inpatient
ward, I was almost the only person involved with my
wife’s care, although I had the support of family and friends. As
the dementia progressed this became unsustainable and Freda was
sectioned and admitted to hospital.
- Involvement In the inpatient
organic older person’s mental ward of the hospital
The staff were very extremely caring and
skilled in their treatment of Freda. However, I am sure that
she would have been happier if I had been able to spend more time
in the ward with her personal care and stimulating activities
instead of being restricted to very short visiting times.
- Involvement in the care
When Freda moved into a care home, I was
very much more involved with her personal care, and mental and
physical health. This included the nurses acknowledging my
understanding of Freda’s very brittle type 1 diabetes. I discussed
all the activities Freda and I were planning to do outside the care
home with the nurses and I was consulted on all proposed changes to
Freda’s care plan etc.
As Freda’s mental and physical health
deteriorated, I was trained how to feed her without choking her,
and how to provide some simple physiotherapy to maintain leg
Unfortunately I found that not all the
families who visited had a similar involvement. A large number of
them seemed to be unable to maintain a meaningful contact,
particularly as the dementia increased. Towards the end of her
life, Freda who had not spoken in sentences since she had a stroke
said, very distinctly, “I always knew you would look
after me if I was like this”. This was the only time that she
acknowledged that she had a mental health problem. This was very
emotional and shows that people with advanced dementia, who have no
verbal communication, must still be aware of the fact when they are
- Involvement in the medical wards
of the hospital
A year after entering the care home, Freda
began to have a series of medical problems which resulted in her
having treatment at the inpatient medical wards of the local
hospital. All these stays were very disturbing and I was very
unhappy with the standards of care. The staffing levels and the
knowledge within the wards were inadequate to handle the
Freda was inappropriately
catheterised, left alone in a single room for long periods, and was
often very distressed. Initially I was not allowed to have extra
time outside visiting time to provide stimulating activities or
help with feeding. The situation became so bad that having
complained bitterly about the situation, I was allowed to help to
care for her in the ward outside visiting time. However Freda’s
diabetes control was never discussed with me. The insulin programme
that had successfully controlled her blood sugar levels for a long
time was changed, because it was inconvenient for the ward. The
insulin programme was returned to its former model on return to the
How can the involvement of carers be
It is almost invariably the case that
before the service user moves from home, the main carer is a close
friend or family member. I do not understand why from the moment
the service user moves from home, the existing willing and able
carer is often removed from any caring role, particularly in
hospital. The carer should be able to retain as much
as they wish to and are able to
provide. The routine should be arranged so as to
allow the carer to continue to have a meaningful one-to-one
relationship with the service user. This is comparable to the
position of the parents of a young child in a similar position. If
this principle is not used from the start of the disease it is very
difficult to establish it later. Carers must be trained in the
changing requirements of the service user as the dementia
progresses and be accepted as part of the mental health team.
The benefit of stimulation one-to-one activities
throughout the dementia
A great many studies have shown that
one-to-one activities greatly enhance the quality of life for
the person with dementia. This is true from diagnosis until
How were stimulating activities carried out throughout
As soon as I suspected that Freda was
having problems with her mental health - years before
she received an official diagnosis - I organised our lives so that
we could do more activities together. Left to herself she quickly
became bored and difficult to live with. When Freda eventually
received a diagnosis of Alzheimer’s, she had regular appointments
with the older person’s psychiatrist at the local hospital. My
presence was always accepted at these, both by Freda and
the psychiatrist. Freda readily accepted the suggestions we were
given at these visits to improve her memory and she enjoyed doing
them. They became part of our lifestyle.
- We read a book aloud together and
discussed it every few sentences.
- We kept a daily diary and re-read it continually.
- When Freda had forgotten the details of an
outing, we tried to repeat the same outing the following day.
- We took lots of instant photos and looked at them when we
- We took great care not to become isolated
from other people.
- We sang familiar songs together.
Freda enjoyed this lifestyle at home until
a crisis in the Alzheimer’s made it impossible for her to continue
to stay at home and she was sectioned into the local
- Activities in the hospital’s older
person’s mental health ward.
The ward was very short staffed and
did not have anyone available to carry out activities. The staff
did however have a good relationship with the patients and
communicated well, but they had insufficient time to give
mental stimulation except very briefly during their general nursing
duties. I tried to continue as many of the activities we had
done at home, but I was restricted to very short visiting times. We
often sang together in Freda’s bedroom. Sometimes other patients in
the ward came to join in and appreciated the activity very
- Activities in the care home during
the early years
Freda entered the care home in February 2004.
Stimulating activities again came to be part of Freda’s everyday
life. Our daughter Carol would visit about once a week and take her
mother out. I would visit on all the other days. We visited all the
garden centres for about 25 mile radius and had lunch in country
pubs and cafes. I took Freda to church services on Sunday
Our favourite place was a training and work
experience centre for mentally and physically handicapped young
adults. We had lunch, played on the putting green and were treated
in a very understanding way by the staff.
We attended a wedding in our local Church.
The care home staff were superb, getting Freda ready for the
wedding. She had a special hair do and was beautifully
dressed in a maroon two piece suit, with everything, including
her finger nails colour co-ordinated.
- Activities in the care home later
As Freda’s mental and medical health
deteriorated, we had to alter our activities. We spent more time
inside the care home, with other residents. We joined in
organised activities, such as painting, physical exercises, baking,
and making decorations. Freda needed a lot of help, but she enjoyed
them. We carried on our games, puzzles and singing, on a one-to
As Freda’s health further declined,
stimulation became part of her personal care. Freda lost the use of
both feet and was confined to a chair. A physiotherapist visited
weekly, moving all Freda’s joints to ensure that Freda’s limbs did
not stop working. The physiotherapist instructed me on exercises
that I could do with Freda daily. This was very successful; Freda
enjoyed the exercise and the associated games of counting and
singing for the remainder of her
Although a small number of activities were
organised for residents in the early stages of dementia in the care
home, the more severely ill residents were bored and spent a large
part of their day sleeping. I raised my concerns with the care home
manager and mentioned the lack of stimulation for severely ill
residents to a care home inspector. The inspector told me that I
did not understand that this behaviour was part of the dementia. I
know from observation and experience that this is it is not always
the case. Suitable activities can be appreciated by care home
residents up to the point of death.
How can the situation for providing stimulating
activities be improved?
The situation in the inpatient ward where
Freda was first admitted with Alzheimer’s has improved
significantly over recent years. Specialist staff are now employed
to provide therapeutic activities and they have access to
However, although lip service is given
to providing stimulating activities throughout the course of a
dementia, in practice it is a much neglected
area - it is always the first service to be cut
when cost savings are made.
Willing existing carers and suitable
volunteers should be encouraged, trained and used to provide
one-to-one activities for
people with dementia in addition to
professional trained staff. All staff in contact with service users
at home, hospital or care home must understand that their duties do
not just consist of dressing, washing, toileting and giving
medication. Meaningful communication and stimulation should be in
everyone's job specification. Care homes should not just
provide Bingo and entertainment for the people in the early stages
of dementia but ensure that all their residents receive suitable
activities up to the point of death. This may be merely holding or
stroking the hand of a dementia patient near the end of life.
The benefits associated with good quality care homes
Good quality, affordable residential care
is essential in the wellbeing of all older persons who are no
longer able to live in their own homes for a variety of
- What happens in
Care homes in general, with a few notable
exceptions, do not provide acceptable care for their residents. The
staff are often badly paid, inadequately trained and have a low
status. This results in a very high turnover. The culture from the
management is often to consider the staff are only employed to
dress, wash, toilet and feed the residents. The holistic approach,
that everyone in the care home should considered to part of a team
to improve the wellbeing of the residents, is not thought to be
important. If the actions within a care home are not measured at an
inspection visit, they are not done. Specialist homes e.g. EMI
Nursing, are often a long way from families. Families often
believe that they are not getting value for the fees that are
- How can the situation be
As soon as possible after a resident
arrives, the carer who has been looking after the person
previously, or a family member who feels most responsibility for
the resident, should be encouraged to have an unhurried informal
meeting with the manager of the care home. The resident should be
present if they wish to be and they have sufficient mental capacity
to understand what is happening. At this meeting the
resident’s life story and their future needs should be discussed,
this is in addition to any life story, or care plan that is written
down. How the carer or family member can be involved if possible
and desired must be considered.
The most important element within a care
home is the interaction between the staff and its residents.
In order to recruit and retain suitable staff, it is essential
that the status of these employees is improved. Minimum pay and
poor working conditions are not conducive to having good quality
staff. Training of staff in all aspects of care must be a priority.
The management must have a culture that care is not just providing
the essentials to keep a resident alive, but also maintaining
as high quality of life as possible. Meaningful continual
interaction between the care worker and the resident, in addition
to any organised activities, is essential.
A large number of care homes that are
not E.M.I. registered have residents who have dementia. This is
inevitable as residents develop the disease during their stay. A
start must be made so that eventually all care homes are suitable
to be registered as EMI and all staff are trained in dementia. This
will have the advantage of having many more care homes within the
reach of persons entering with dementia. These residents can then
live in care homes that are closer to their families.
Care home inspections must be used much
more than at present to improve standards. They must take place
without prior notice. If large numbers of residents are found to be
asleep, bored or inactive, the situation must be investigated, to
see if suitable stimulation or inappropriate levels of medication
is being given to residents.
Activities that are on notice boards and
specimen menus must be questioned to find out what happens in
practice. Financial penalties must be an option if all attempts by
the inspector to get an improvement have failed.
Procedures must be put in place that enable
care homes which, in spite of these measures, still
continue to be of an unacceptable standard. Care homes which are
placed under new management should not move
residents. Moving residents with severe dementia to
unfamiliar surroundings is known to cause distress and possibly
early death. This must happen only after all possible alternatives
have been exhausted.
Many of the problems arising in care homes
arise through financial constraints. Some care homes do make large
profits but many are in financial difficulties. Good quality care
is expensive to provide. To retain the standard at the present
unsatisfactory level is not an option, even in these economically
difficult times. All methods to increase funding into the area must
The general situation with older people's mental
Older people’s mental health problems differ in many ways than
those working age adults. As we get older, there are many changes
in our lives. These include social changes, reduction in
income, loss of status, death of friends and family
members. There is an increasing possibility of dementia which
may co-exist with other mental and physical illnesses. The
interaction between physical and mental health is very complex.
My involvement in older people's mental health outside
caring for my wife
About two years after Freda’s entry into
the care home and several stays in the local hospital for medical
treatment, I received notification of a new group of service users
and carers based in the local hospital, concerned with older
person’s mental health.
I was informed that it was not a support
group but would be directly involved in all the appropriate areas
of the hospital. This was the LOTUS group
To Users of
Services). Over the years I have become
increasingly involved with the activities of this group. The group
has representatives on all the major relevant committees of the
Betsi Cadwaladr University Local Heath Board, Wrexham and
Flintshire. It also has members on the selection panels for all
appointments concerned with older person’s mental health.
Membership of this group has lead to my involvement on a
variety of national organisations. This wider experience has
revealed that dementia, my original interest, is not the only area
of older person’s mental health where practises that have been
rigorously tested and shown to be effective are not being
The benefits of a high level of public awareness and
concern with older people's mental health
It is easily demonstrated that the
wellbeing of people with dementia, depression or other mental
illness, is greatly improved if they live in a neighbourhood that
is aware of their problems and involves them as far as
- What is the present
People with mental illnesses are often
excluded from participating within the general community because
of a lack of knowledge as to how things can be
adapted to enable these people to take part. Society is often so
risk adverse that these individuals are prevented from taking part
in everyday affairs.
- How can the present system be
The present culture must change. This
required change can only be accomplished by education, publicity
and example. The whole of society and not just the medical
profession must be included. Churches and all kind of social groups
can help. This involvement by the community does work.
Examples of the local community being
- A popular walking group which has a mix of
local residents and people with dementia, learning difficulties and
depression. Over the years this has developed into a moving social
group where the talking is more important than the walking.
- A regular coffee morning where a person
with dementia sits alongside a carer to take the entrance money,
the carer handles the cash and the customers chat with the person
What happens in practice?
- The present financial situation is
threatening to remove funding from services which are already
underfunded. Due to lack of funding, staffing levels are about 30%
lower than in adult services. This results in service users
receiving less than adequate treatment and support.
- Specialist nurses are being removed from
the communities where they have worked for some years assisting
service users and their carers in their own homes.
- Services in some areas are near breaking
point and are relying on the commitment of the mental health team
to keep going.-
- GPs and staff in medical wards do not
always have sufficient training in older people's
mental health resulting in inappropriate treatment.
How can the situation be improved?
Mental health in general should have a
proportion of the general health financial plan according to the
needs of the service users. Within the mental health budget, older
people should also have a share in proportion to their needs.
Ageism must stop in practice, not just in
theory. Older person’s mental health liaison teams can be shown to
improve outcomes for service users to assist and train medical ward
staff and GPs.
Older people have problems with their
mental health which are different and more complex than the rest of
the population. Historically they have been badly served in the
provision of services. We are all living longer and this problem
will increase over the coming years. There are a great many
known and effective evidence-based practices which could
easily be implemented. It is important that efforts are made
to change the culture of the population in general and funding is
provided to enable more of the proven practices to be