Raising awareness of Early Onset Alzehimer's

In  2010 Pat Moffett wrote his book ‘Ice Cream in the Cupboard’ about the true story of caring for his late wife Carmen who had early-onset Alzheimer’s. At the time Pat was still pursuing his long-term career in international logistics but after he retired in 2017 he had more time to devote to raising awareness of the illness. In 2017, by chance, he met another author on a plane and they exchanged books. Two days later Pat received a phone call from his new contact who told him that Pat’s story should be made into a movie.

There is little difference between Early Onset Alzheimer’s and Alzheimer’s, but many early onset patients still retain the physical strength associated with a younger person. This can put their caregiver in dangerous situations because Alzheimer patients can become very angry and agitated which can lead to violent behaviour. Alzheimer’s also accelerates more quickly in younger people and the medications used are generally more effective in older patients.

In Carmen’s case, Pat first noticed that they had started arguing a lot. Things had been quite busy so he decided to take her to Puerto Rico for a holiday. They checked in to their hotel and went out for dinner. Pat was looking across from the verandah of the restaurant and when he turned around Carmen hit him. She then ran out of the restaurant. When he caught up with her she was still very angry but they got a taxi and went back to the hotel. She then went straight to sleep.

Pat really didn't know what was wrong so he was really surprised when a while later she came out to the terrace where he was sitting and said she was really hungry and when were they going to eat. She couldn’t remember anything that had happened. Pat was so concerned that he got a flight home for them the next day.

When they got home things seemed to level off and go back to normal. She wouldn’t go to a doctor but after going food shopping one day Pat realised that Carmen had put the ice cream in the cupboard rather than the fridge. Pat knew he had to get her to see a doctor but the situation was taken out of his hands soon afterwards her employers realised there was a problem and suggested she get tested. She failed the test and came home that evening and told Pat that she had a ‘touch of Alzheimer’s’.

Pat highlights how importance it is for carers to take care of themselves otherwise the disease claims two victims. Some friends and family aren't so supportive when they find out someone they know has Alzheimer’s so often it comes down to hired caregivers.  Pat found a lady who he had experience dealing with Alzheimer’s patients and he thought he could go back to work but within 5 days Carmen had punched the caregiver and run away from her. Other helpers followed but the same problem occurred. Pat felt it was better to try and keep his job so the next step was to try daycare. He found a centre close to their home. It was very expensive but it worked well for a couple of weeks but he was then called from work as Carmen had punched a 90-year-fellow patient.

Luckily a legal case was not pursued but Carmen wasn’t allowed to go back to the daycare centre. It was then suggested that she be hospitalised so she could be tested to find out if it might be possible to use anti psychotic drugs to calm her down. She was monitored 24 hours a day and after being in hospital for three weeks Pat was told there were only three drugs that might help her and that there use might be limited. The drugs were so strong that they needed to be monitored constantly so the recommnedation was that she to go straight into 24/7 care. Whist in full time nursing care Carmen still had violent episodes but eventually, after nine years, her body started to fail and she died. Pat felt guilty because in many ways he had wanted it to come to an end because Carmen wasn’t the person he knew anymore.

Early on in the process of looking after Carmen, Pat realised he would need support from people who would understand what he was dealing with. He found a local support group but everyone was much older than him and didn't understand Carmen’s violent behaviour. He realised there was nothing for the carers of Early Onset Alzheimer’s patients so he started a new group with a social worker with regular meet ups for dinner whilst professional carers looked after their loved ones

It is thought that you can defer the onset of some Alzheimer’s though diet, stress reduction etc. There is a genetic risk though. Pats wife Carmen, her brother and two sisters were all were diagnosed with Alzheimer’s in their 50’s and died in their 60s. When he tried to track back, Pat found out that Carmen’s father who had been an alcoholic, had also suffered from bouts of forgetful behaviour which at the time was put down to his alcoholism.

The motivation for Pat’s book came from the fact that he simply hadn’t realised that Alzheimer’s could affect people at such a young age. Consequently, many of the caregivers are very young themselves so they became the drive and inspiration to get the story out both nationally and internationally.

 You can listen to the podcast in full and find out further information about Pat here. Our previous podcasts, upcoming guest list and previous blogs are also available.

You can find out more about Pat and Ice Cream in the Cupboard at pat.moffett.com

Gender, sexuality and communication.

The latest episode in our Resilience Unravelled series has now been released, Resilience Unravelled – Gender, sexuality and communication.

In this episode, Dr. Russell Thackeray talks to Georgie Williams, a specialist in gender and sexuality whose work focuses on how gender and sexuality varies in different communities and cultures around the world and how the Wests influence on those communities has shaped those identities.

Georgie identifies specifically as genderqueer and as pansexual. Georgie’s recent papers have focused predominantly on marginality pertaining to queer and specifically non-cisgender identities, but has also written about aspects of sexuality, structural violence, borders and bodies as sites of resistance through interdisciplinary and intersectional lenses.

Gender and sexuality play an integral role in all of our lives. Our dynamics, our sexual and non-sexual relationships and the roles assigned to us socially are often based around our gender perceptions of one another. In understanding how gender and sexuality vary, we can understand miscommunications between communities and cultures based on a mistranslation or misalignment of norms and practices.  If we understand them, that exclusivity is a means to create productivity, symbiosis and communication within communities. Understanding sexuality is about communication, something that benefits all of us

Georgie feels that the younger generation, in particular Generation Z, engages and focuses with this message more than many of the older generation. By focusing on visibility and representation, community based social change and practice can happen which really matters as it gives voices to individuals who were not afforded that opportunity in the first place. She thinks that globalization and access to the internet virtual spaces and social media has given younger people the opportunity to congregate and find their community.

The younger generation has been raised in a time where conversation around gender and sexuality is more open than ever before.  People can discuss sensitive matters in confidence with others who have gone through it before. In time social change can be enacted and communities will become more visible in non-virtual spaces. Small communities and marginal groups have always existed and found ways to congregate but now this is more feasible and visible.

One of the benefits of engaging with diversity in the workplace is that it focuses a brand new lens on what an organisation is doing. This will help shed light on potential blind spots that existing team members may have missed because of their own standpoint or experience.

You can listen to the podcast in full and find out further information about Georgie here. Our previous podcast episodes and upcoming guest list are also available. Our full blog archive is also available.

You can find out more about Georgie at /slashqueer.com

Compassion in the workplace

The latest episode in our Resilience Unravelled series has now been released, Resilience Unravelled – Compassion in the workplace.

In this episode, Dr. Russell Thackeray talks to Nate Regier who is the CEO and founding owner of Next Element Consulting, a global leadership firm dedicated to bringing compassion into the workplace. Nate is a former practicing psychologist and expert in social-emotional intelligence, interpersonal communication, and leadership.

Nate is now based in Kansas but originally was from the mid west. His parents were famers but decided to become missionaries so in the early 70’s Nate was living in Africa.  He spent his early childhood Zaire which is now the Democratic Republic of Congo and went to high school in Botswana in the 1980s. Nate feels that by travelling around at such a young age he learned to adapt and became very used to different cultures which has given him a different perspective of what its like to live in America now. He also believes that Africa was where the seeds of compassion were sowed in him Nate struggles with the traditional stereotypes of compassion such as Gandhi and Mother Theresa. He feels compassion is more than empathy. The Latin meaning of compassion is to suffer with – to have active engagement not just empathy.

Nate feels that conflict is a natural product of diversity - because we are different there will be conflict. Conflict is the energy created from diversity and means we have choices and opportunities and enables us to thrive and innovate. The only question is how will we use the energy of conflict?  A lot of conflict energy is spent in drama. In the drama triangle there are three roles – persecutor, victim and rescuer. The three roles can be quite fluid, with people moving between them and when people play these roles they feed off each other which distracts energy from well laid plans.

Nate originally trained as a clinical psychologist but felt it did not really suit him. He preferred more dynamic things such as coaching, consultancy, training and writing so, with some partners, he set up Next Element in 2008. Their aim was to take what they had learned in the social sciences field and apply it to the corporate world through leadership and development training and coaching programmes.

Many consultants in this field tend to play rescuer role – they know what’s wrong and have the solutions but if it doesn’t work its not their fault – it failed because you didn't do what they advised.  They actually set you up for failure and dependence. Nate feels that the goal is capability, self-confidence and independence but that all coaching relationship have a natural life and the coach and coachee need to know either can walk away from the relationship. Nate feels many consultants work to become needed rather than effective which is why he has developed certification programmes to impart knowledge which allows the company to carry on without him.

Nate views leadership as the practice of managing diversity towards shared goals.  Diversity is necessary as it provides the perspective we need so leaders need to cultivate a skill set to manage diversity whilst working towards shared goals. Two of the most essential competences needed to achieve this are communication and conflict management skills. Not everyone can clearly see a path so leaders need to translate the plan so everyone can understand – leaders need to have vision and strategy but also the human capital to go forward.

Nate’s latest book is called Seeing People Through and is about personality differences and inclusion through the Process Communication Model, a behavioural communication model that teaches people how to assess, connect, motivate, and resolve conflict by understanding the personality types that make up a person’s whole self.

You can listen to the podcast in full and find out further information about Nate here. Our previous podcast episodes and upcoming guest list are also available.

You can find out more about Nate here.