When your loved one receives a dementia diagnosis, the world can suddenly feel upside down and out of kilter. Here, Charlie Hoare, Managing Director at Huntington & Langham Estate in Hindead, gives advice on handling a dementia diagnosis in a loved one.

Dementia Is A Journey

Dementia is a journey. It often starts in a dark, hostile place with a flimsy leaflet as a map and everyone assuming you know which way up to hold it. But you are not alone on this journey; there are various people and organisations that can be your companions along the way.

If you feel lost already, Alzheimer’s Society is a good place to start. Their website maps out all you need to know about dementia – from ‘signs and symptoms’ to an online shop with a whole host of helpful items, such as Velcro clothes by The ABLE Label that promote dignity and independence.

Understanding Dementia Can Be Overwhelming

Be wary of information overload though. Dementia is a huge topic that even dedicated researchers do not fully understand yet. If you do become overwhelmed, the brilliantly named Dementia Adventure has an invaluable free online dementia skills session called Mood & Motivation. You must attend their ‘Thinking Differently About Dementia’ first, but once you have, you will be scouring their website for other sessions to attend, not to mention their supported holidays.

Dementia Home Care Or A Dementia Care Home?

At some point you will decide how best to look after your loved one; either as an unpaid carer or enlisting the help of home care or a care home. Either way, you will likely feel a huge sense of responsibility for them, not to mention all the emotions that come along for the ride – guilt, loss, frustration, stress. There are no two ways about it, you need to look after yourself as well. This is easier said than done when you are also juggling the endless demands of your own life, but coaching is a concept that could help.

Coaching For Unpaid Carers

Coaching is currently growing in popularity way beyond the realms of sport where it is most associated with specialist coaches for eating, sleeping, and every other aspect of life. Coaching For Unpaid Carers is a refreshing resource that aims to empower people to live the life they choose. The ‘Stress Buster’ video on their website is worth a watch. But there are many local lifestyle coaches that may be able to support you. Aim to find a recommendation or contact a reputable agency.

Specialist Dementia Care Homes

Finally, there are specialist dementia care homes for any crises along your journey. In our experience at Langham Court, and despite promises they may have made to their loved ones, people either contact us at the beginning of their journey for reassurance that help is at hand when needed, or when they have reached a crossroads in their care due to a hospital admission, an incident at home or a discussion about the end of life with their GP or other family members.

Moving Into Care Is Not The End

People often feel as though moving into a care home is the end of their journey, but good care homes will work with you rather than replace you. For some it marks the beginning of a new journey, one where they remain part of the care provided but regain their relationship with their loved one. But everyone’s journey is unique, and you must find the support that suits you.

Charlie Hoare is the Managing Director of the Huntington & Langham Estate, which includes specialist dementia home, Langham Court. A fully accredited Butterfly model care home, Langham Court puts the individual at the heart of all of its decision making, ensuring both the home environment and care is tailored to care recipients’ personal preferences and needs.

If you’d like to discover more about Langham Court, please contact us

Many care homes provide dementia care, but there is a difference between care homes that accept people with dementia and specialist dementia care homes. The former might have some signage dotted around to help people orientate themselves. The latter will have a robust culture of care, usually implemented as a care model, which is seen in every interaction between the staff and residents.

The Butterfly Approach

Ever since Langham Court opened in 2013 it has been an accredited Butterfly home. The Butterfly approach is a care model that focuses on enabling people to be ‘Free to be me’. In essence, Langham Court encourages people to express their feelings in ways that traditional care homes often ignore or attempt to control.

Butterfly Home Audit

https://www.youtube.com/watch?v=j_iJyX_x0m8

A Butterfly audit, which is required for accreditation, identifies a sliding scale of 5 different types of care interactions – meaningful, positive, neutral, negative, and controlling. The majority of care homes that are audited have 70% of interactions (between staff and residents) in the neutral, negative and controlling categories. To be an accredited Butterfly home, 70% of interactions must be in the meaningful and positive categories. 

Positive Interactions Versus Negative Interactions

Examples of these types of interaction can be found in everyday occurrences, such as something as simple as making toast.

• A meaningful interaction might be a carer asking what you would like on your toast, sitting next to you while spreading your preferred choice, and reminiscing about how the smell of toast reminds them of their childhood.
• A positive interaction would perhaps look similar to one you might have experienced at a hotel breakfast buffet. Well, a decent one anyway, where a waiter gives you a choice, a smile and a bit of small talk, but doesn’t sit down and join you.
• A neutral interaction is the bad buffet equivalent where something you ordered on a tick sheet the night before is plonked down in front of you with little or no personal interaction.
• A negative interaction might involve being encouraged to wait until lunch because it is getting late. The intention might be good, so as to not spoil your appetite, but it is denying you choice and independence.
• A controlling interaction could be denying you toast altogether due to already having had some, and perhaps talking over you to another member of staff saying that you’re always asking for toast when you’ve already had some.

Limiting interactions to neutral, negative and controlling tends to go one of two ways. People either become compliant and withdrawn or frustrated and annoyed. People with dementia, whose ability to control these emotions has been lost, either become upset and depressed or irritable and aggressive, and can become labelled by these behaviours forever.

The Approach of The Carer Influences Behaviour In Dementia Patients

Professor Tom Kitwood, whose core principles of person-centred care helped shape the Butterfly approach, identified that it is not necessarily the dementia that causes people to display challenging behaviour but the approach of the people caring for them. This is why Butterfly homes, with a majority of positive and meaningful interactions, have such successful outcomes for people with dementia, especially those who may have previously been labelled ‘aggressive’.

It does not necessarily mean that people stop displaying such behaviours. We all get frustrated from time to time, and having dementia presents a whole host of situations that almost anyone would find frustrating. But Butterfly homes see these behaviours as a form of communication rather than a reflection of someone’s personality.

Butterfly Homes Use An Emotional Risk Assessment Tool

A common occurrence of such behaviours can be while providing personal care, which is necessary to prevent infections but can be incredibly upsetting for people with dementia. When clinical care needs to be carried out there is a risk that keeping someone safe comes at a cost to their wellbeing. In these situations, Butterfly homes often use an emotional risk assessment tool to make sure clinical and emotional care are balanced, and such care is provided for the person, not just their condition.

An emotional risk assessment might look at how frequently personal care is required and what time of day it is provided rather than fitting it in with the daily routine of the home when it suits the staff rather than the resident. If this doesn’t work, and personal care causes distress regardless, Butterfly homes might allocate a different member of staff to the one providing the physical care to visit the person afterwards to support them emotionally.

It is this emphasis on emotional care and meaningful interactions that all specialist dementia care homes should have. If you are looking for a specialist dementia care home, simply spend a minute or two observing a lounge or day area, and count the different types of interaction, as outlined above.

If you’d like to learn more about our Butterfly Home Langham Court, please click here

To see if there is a Butterfly home near you, check the map at the link below.

https://meaningfulcarematters.com/partners/