'There is still life after dementia' - expert give tips on how to deal with diagnosis

From this experience, I saw that many people expect that receiving a diagnosis of dementia will be devastating for the person and often family members are concerned about them being told.

For some it does cause distress but for most it either evokes no emotional response or it brings a sense of relief. So many times I have heard the person with dementia (PWD) say “Thank goodness. I knew there was something wrong with me. Now at least I know”.

Whether the person wants to receive their diagnosis or not is their right but knowing it can enable the person to consider their future and plan for it whilst they still can. It also means they have access to various professionals who can offer services to them to address specific problems quickly and enable them to have as good a quality of life as is possible during the course of their dementia.

Unnecessary distress As a Clinical Psychologist I have observed many cases where the PWD has been unnecessarily distressed.

The causes for this usually being:

(1) Those around them not having a good understanding of the individual, their personality, likes and dislikes, interests, medical history etc.

(2) Not having a good understanding of dementia.

(3) Failure to fully assess cognitive abilities (memory, orientation to time, place and person, problem solving, reasoning, attention, spatial awareness etc) or behaviours before providing advice on or implementing management strategies.

(4) Taking a “one fix fits all” approach and not developing interventions to address each individual’s specific problems

(5) “Wrapping the PWD in cotton wool” on receiving a diagnosis, “taking over” and preventing them from being as independent as possible and from engaging in activities or carrying out tasks they were enjoying, gaining a sense of pleasure and achievement from, and doing safely hours/days before they stepped into their consultant’s office and were told “You have dementia”. Often leading to low self-esteem or depression.

(6) Constantly highlighting their problems to them “I told you that already”.

(7) Seeing everything as being due to dementia. Not recognising, like the rest of us, the PWD can still have another medical or psychiatric condition, experience pain, have needs to be met etc, but is unable to communicate this.

What can be done to help the situation? Some PWD in the early stages become anxious and/or depressed. Whereas psychological therapies for anxiety or depression would be offered to many of us suffering from these conditions it is rarely considered an option for PWD.

Yet, Cognitive Behavioural Therapy (CBT) the most commonly used therapy for anxiety and depression, has successfully been used with PWD in the early stages of dementia. However, it requires a therapist with expertise and experience in this area to provide this therapy as adaptations to therapy to meet the specific needs of each individual are needed.

Assessment and Management of Cognitive Impairment PWD have problems with memory, orientation, attention, reasoning, problem solving etc. How dementia affects a person’s cognitive functioning is different for each individual especially in the early stages so strategies used to help them manage their difficulties will be different for each individual.

A good, thorough cognitive assessment carried out by either a clinical psychologist with expertise in what is known as neuropsychological assessment and dementia, or by a clinical neuropsychologist will shed light on an individual’s specific problems and inform the clinician about the type of intervention required to address these. By a good, thorough cognitive assessment

I do not mean the 10 minute or 30 minute memory tests carried out by the GP, dementia nurse, consultant psychiatrist or even sometimes the occupational therapist.

If we consider memory problems, assessment may lead to the person being taught strategies which compensate for their problems, for example using memory aids or smart technology. For the person who forgets to switch lights off or engages in dangerous behaviours (wanders outside at night, leaves pans on the cooker, forgets to switch off electric heaters or leaves the bath running)

There are many gadgets and pieces of smart technology readily available on the market i.e. timers to plug electrical equipment in to to ensure it is switched off, smoke detectors, heat sensors which detect sudden changes in temperature placed above cookers, water sensors which detect flooding placed on skirting boards in bathrooms or kitchens, mats with sensors activated when tread on placed by beds or doors leading to outside, or movement sensors.

The latter trigger alarms which alert either the PWD or others to the danger. Some can feed the information to someone at another site who can alert the PWD by telephone or by speakers within their home, or alert someone else who can go to the PWD’s aid.

Memory aids need not be so technical or even cost anything. Dosette boxes for medication, post-it notes, a phone call or text, mobile phone reminder, alarms can all be used to remind the PWD to do something. A calendar clock showing the day, date, month and time will help orientate them. These are just a few examples of simple aids which can make such a difference to the PWD and allow them to live independent, safe lives for longer.

However, it is so important to remember to only address a specific problem as it occurs and not to rush in and make many changes to the person’s environment. Too many changes can overwhelm the PWD and cause unnecessary distress. That is why assessment is so important. Identify the problems and address only these.

Assessment and Management of Behaviour PWD, usually in the later stages, are all too readily put on medications for what are typically seen as “problem” or “challenging behaviours” e.g. wandering, shouting, hitting out, incontinence etc. Often this can result in them being left over sedated and unable to interact with those around them or with their environment.

We’ve all seen the row of people sitting in their plastic covered wing back chairs in the lounge of the care home, heads drooped, sleeping any time of the day with the TV blaring and occasionally the budgie chirping in the background! It’s easier to sedate than to take the time to understand what is causing the behaviour and to put in to place some way of managing it.

Very often the way they behave is put down to the dementia when in fact it is not. The dementia contributes to their problem as it affects the person’s cognitive functioning and their ability to communicate what is wrong with them. The woman with dementia who screams, shouts and hits a male member of the care home staff whilst he tries to undress her so he can wash her.

Is she aggressive and needs to be sedated? Or, as a result of cognitive difficulties does she not realise she is in a care home and does not recognise the man as a member of staff? Does she therefore see a stranger in her bedroom trying to take her clothes off?

What would you do?

The man taking his clothes off in the care home lounge, or walking around in his underwear. Is he sexually inappropriate as I often hear? Or is he trying to say it’s too hot in here? Or perhaps rooms are poorly labelled in the care home and he is having difficulty finding the toilet and ended up in a public area?

Remember Yes getting a diagnosis of dementia can be devastating but it can also be a relief for the PWD, can give them the chance to plan for their future, and open up doors to getting the help they need when they need it. Remember the person without dementia who walked into the consultant’s office is the same person with dementia who walked out. Nothing changed during that consultation.

They have the same capabilities as they had that morning when they woke. They don’t need to be prevented from doing things for themselves so long as they do them safely. Allow them to be as independent as possible. Allow them to socialise. Allow them to live. Step in only when necessary to do so. Remember if they struggle at times there are professionals out there who can help.

They do not need to be distressed or be in danger. They do not need to be sedated. Remember don’t blame the dementia for everything. Remember the importance of a good assessment.

Most importantly, remember - there is still life after a diagnosis of dementia.