Clifford Greenhalgh, former member of RCPsych Carers' Forum

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 January 2009.

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.

The 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 higher.

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 people,

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 dementia.

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 home

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 movement.

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 being neglected.

 

• 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 Alzheimer’s.

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 care home.

How can the involvement of carers be improved?

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 involvement

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 death.

How were stimulating activities carried out throughout the dementia?

• Activities at Home.

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 returned home.
• 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 hospital.  

• 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 much.

• 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 mornings.

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 years

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 -one basis.

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 life.                                                       

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 appropriate equipment.

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 and staff

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 reasons.

• What happens in practice?

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 charged.

• How can the situation be improved?

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 be considered.

The general situation with older people's mental health

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 (Listening Openly 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 applied.

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 possible.

• What is the present situation?

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 improved?

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 involved

• 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 with dementia.

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.

Conclusion

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 implemented."

August 2011