An Interview with CHRISTINE MCCALLUM, Dementia Link Worker for Wester Ross in Scotland. ” What Makes a Real Difference to People with Dementia is How They are Cared for»

Dear Readers,

It is my pleasure to introduce you to Christine Mccallum and give her voice to let you know how people living with Dementia in the Communities of the Highlands of Scotland deal with their day-to-day life. Also, how the right approach, enjoying and loving what you do, as Christine does, make a real difference.

Let’s meet Christine!

Photo courtesy from Christine Mccallum

My name is Christine Mccallum. I left school at sixteen and went to the big city of Glasgow to try discover the career path I wanted to take. I thought of joining the police as my uncle was in the Glasgow police force, but decided I wasn’t cut out for that.

I then did a three year apprenticeship in hairdressing but I knew that I hadn’t found my true vocation and hadn’t really settled into city life, there was always a pull from this enchanting part of the world taking me back.

I live in the beautiful small fishing village of Ullapool, situated on the West Coast in the very rural Highlands of Scotland. There is a great Community spirit in all the small villages that make up this scenic district called Wester Ross where I now work.

I am very much a people person and although the jobs I had undertaken in hairdressing, retail, hospitality work etc all involved communicating directly with people, I knew I hadn’t found true job satisfaction.

I got the opportunity to work as relief social care worker in our local care home for older adults which accommodates ten residents with varying degrees of mental and physical frailty, and suddenly everything I was looking for fell into place……. I discovered my true vocation… be able to care for older people and make a difference in their lives.

The importance of a kind word, a gentle touch and to genuinely connect with people who have so much to teach us. To share precious moments, stories and memories with people is a privilege.

How long have you been working with the elderly?

For the last 15 years I have been working in the care home, and had the opportunity to gain Scottish vocational qualifications in svq 2,3,4, a supervisory award, and personal development awards in medication, and promoting excellence in dementia.

Up until one and a half years ago I worked in different roles and latterly was Acting Manager of Lochbroom House, supervising 18 staff members. But I began to realize I was spending more time in the office with paperwork, away from the hands on caring I loved.

The opportunity came up for me to go on a two year secondment as dementia link worker in the Community with Alzheimer Scotland and I jumped at the chance.

What is Alzheimer Scotland?

Alzheimer Scotland is a leading dementia charity and their aim is to improve the quality of life for people with dementia and their carers.

Their vision and belief is that if we ensure that people with dementia receive an early diagnosis and good post diagnostic support provided by a dementia link worker for one year. The work that is done during that year will enable many people to make the transition from link worker support to a self managed period.

During this time , the work that the link worker will have done to maintain community connections, build peer support opportunities and make full use of the persons natural supports in the Communities they live, in will provide a robust and resilient position to help them live well with their condition.

This will be drawn up in a person centred care plan and will make sure that each person’s hopes, strengths and wishes for how they would like to be supported are understood, recorded and used to guide all future health and social care involvement that offers support that meets their changing needs.

Alzheimer Scotland also :

– Run support groups for people recently diagnosed with dementia.

– Battle to make sure that legislation takes account of the special needs of people with dementia and their carers.

– Provide day and home care allowing carers to get regular breaks.

– Staff a freephone 24-hour dementia helpline 0808 808 3000 to provide emotional support and information.

– Produce information that helps people with dementia and carers plan ahead.

– Provide stimulating activities to help people with dementia retain their skills for as long as possible.

What is the specific conjuncture in the Highlands and Islands and their Communities working with Dementia?

There are round 4,500 people with dementia in Highland, [over 88,000 people across Scotland].

Nearly everyone will know someone living with dementia in this area and the sad thing is one person in three will die with dementia so of the 553 older people living in Wester Ross over the age of 65, 517 have or will develop a dementia. This figure is expanding all the time.

The most challenging parts of the job are supporting people effectively, giving a quality service across Wester Ross, the very remote and rural area we live in, with limited resources and support from other agencies.

Who are the members of your Dementia work team?

I work as part of the Wester Ross Community mental health team. I work closely with Joe Taylor, community psychiatric nurse for older adults who has over 35 years experience working with older adults and has a wealth of knowledge and expertise.

Joe allocates and introduces referrals to me. I often accompany patients and their families/carers to the psycogeriatrician for their first consultation which are undertaken at the local clinics around Wester Ross.

This can be a difficult and emotional time for everyone, families, carers as well as the people who are facing the diagnosis. There are many emotions experienced,- fear, denial, anger, despair, isolation, embarrassment and even relief.

Joe and I talk daily on the phone and meet up at least once a week and discuss any issues, concerns, changes , discuss new referrals, and updates on the previous weeks visits. Joe is a great support and is always there to give advice and deal with more complex issues including medication issues.

Facing and dealing with dementia can be challenging. Do you have any support to work with your own emotions, feelings, …?

We have dedicated time every week for supervision where I can open up and share my feelings and thoughts and get advice. This time is very important for me as sometimes the various emotions I am sharing with people with dementia and their families is huge and I need to make sure that the steps I have taken to support these families are right. I can draw on Joe’s experience and knowledge and have a great regard for the way he supports people in the Community.

Together I feel we make a good trusting partnership. Joe’s Nursing background and my Social Care experience make the perfect integration between health and Social Care which allows a more streamlined approach to supporting older people in the Community.

What is your role as a Dementia Link Worker?

I work alongside the Community Mental Health team to provide post diagnostic support for people who have had a diagnosis of dementia along with their families and carers for a minimum of one year.

I follow a five pillar model of care, supporting families to :

– Understand the illness and mange symptoms. Help them to come to terms with the illness and learn about self management of the condition].

– Plan for future decision making. Explain power of attorney, guardianship and other legal issues.

– Supporting community connections. I support people to keep doing activities at home and in their communities for as long as possible and also develop social networks.]

– Peer support to source other families experiencing the same so they can share experiences.

Your work give people with dementia voice, empowerment and visibility.

I see myself as the person who makes sure the voice of the person with dementia is heard throughout their journey, along with their families and carers. I want to raise more awareness of this cruel illness.

I want to see Communities include people with dementia in everyday life and accept dementia, [a devastating disease of the central nervous system, in which personality and identity are progressively destroyed] is an illness that people need to talk about, to take out from hiding in their homes, to allow people with a dementia to “live in their Communities”, to take away the fear, to encourage and support families.

I see the desperate isolation as I visit, the fear and devastation as carers and families struggle to hold on, to cope with the changes and the challenging problems and situations as their personal journey progresses.

I want to highlight what makes a real difference to people with dementia is how they are cared for.

Providing a safe environment, meeting basic needs and giving physical care are all essential but only part of the care of the whole person.

Person and Family Centered Care is the approach. How do you deliver this orientation of caring in your daily practice?

I try to deliver a service in a creative, and always in a person centred way, to gain the trust and friendship of the families I support, giving hope to those who too often feel lost, frightened, are in denial and very isolated.

I understand that you need to have a clear and accurate understanding of a person’s abilities, tastes, interests, values and spiritual preferences.

The message I try to get across is that all is not lost; people can still live a quality of life with a dementia diagnosis. They can plan better for their future and get things put in place.

I have learned the importance of my role …to have a named person who understands and can share knowledge and give advice in a timely manner. To develop a relationship based on trust. When this happens, hidden feelings come out into the open, understanding increases, and people feel a sense of worth. It is hugely important to communicate in a language that people understand.

We don’t have to use long winded complicated sentences filled with jargon. I keep conversation uncomplicated when I talk to people and listen carefully giving time for them to express themselves, and show genuine interest in what they have to say.

I have discovered that so called problem behaviours should be viewed as attempts to communicate a need, and the aim should be to try to understand the message and so connect with the need that is not being met.

I have learned the importance of touch and how people like to connect in different ways. It can be just a light reassuring touch, a gentle brush on an arm, a friendly clasp of a passing hand, a gentle hug or kiss.

I get to know how people like to connect each time I visit.Once you gain  people’s trust, you soon know who people are and what is acceptable to them.

What is the most difficult issue to approach?

Probably the most difficult issue to approach is future planning. It can be very difficult to be with people at their consultation and experience with them the “blow” when their dementia diagnosis is confirmed. I have witnessed people break down and cry uncontrollably and feel their awful despair.

Once people come to terms with their dementia diagnosis and the realisation that it is a progressive illness and that there is no cure, I can help to talk with them about getting their affairs in order so that maybe when there is a time in the future that they are no longer able to make important decisions, they will have someone who can voice their wishes.

I have discovered that some people have clear wishes around their end of life but have not voiced these to anyone. Although it is difficult for me to ask these sensitive questions, I know when the time is right for people, and if it is carried out in a kind, caring sensitive manner it is a huge relief for people and their families and carers to have a plan in place.

Could you tell us a specific example?

I am supporting a gentleman in his eighties who lives on his own, his son and family live next door to him. They have created a perfect haven for Dad, taking into consideration the right lighting and simple clutter free environment, overlooking a beautiful view of the Loch where Dad can sit in a comfy chair and watch the ever changing scenery in comfort.

I have built up a lovely relationship with him and his family over the last six months. I have assisted father and son with Power of Attorney, coordinated all support services and built up a personcentred plan illustrating his hopes and wishes as his journey progresses. I visit regularly and spend time with Dad before meeting with his son and family.

Recently we had a discussion around plans for the future.

Dad told me all about his life, growing up, and how his earliest memory was watching his Mother trying to knot a washing line together to hang up the washing to dry as they could not afford much.

He also shared the memory of the joy and simple pleasure he had witnessed when he was in his twenties, watching a young family as they laughed, and chatted, sharing stories with mum and dad as they walked into the local shop where dad gave his three young children their sixpence pocket money to spend.

He told me that he had felt that simple joy, and love that was clearly shown as a family and how important above anything else love and connection is for everyone ……it doesn’t matter who or where we are.

He spoke a lot about his life, the tragedies, the joy, the love he had lived through and how lucky he had been to have built up a business and now to have no money worries.

He is a pleasure to be with and get to know. He has shared many “pearls of wisdom” with me, [one of his favourite ………if you give a man a fish he will not starve for a day…if you teach a man to fish he will never starve].

I know that when I arrive his face light up as does mine.

It was the right time to approach the difficult conversation of death and dying I felt the atmosphere between us tranquil, trusting and at ease.

He told me his favourite hymns he would like people to sing at his funeral service. Without hesitation he told me that when his time had come, he wanted to be laid to rest in the old cemetery where he could be close to his family and near to where the waves washed the shore just outside the village.

He asked me to share this with his son. He went on to tell me he had lived his life and wouldn’t change any of his past, adding that he did not want to be resuscitated if his health deteriorated greatly. I held his hand through this difficult conversation and he grasped it tightly. I sensed a feeling of contentment from him.

For me, it was a great privilege to have been party to his final wishes and a great sense of fulfilment to see that I had helped reach this stage of his journey planned with no fear round his end of life.

What is the most rewarding experience you have lived working with dementia?

There are many rewarding experiences, every day I feel that I have made a difference to people living in their own homes and always the realization that sometimes something small and simple can be huge to a person.

I can remember an incident a few weeks ago when I visited a couple in their nineties. The husband has a severe dementia, is very repetitive, and has little conversation. His wife is tired but feels that this is how her life was mapped out for her. She feels the need to look after her husband independently often quoting “until death do us part”. She feels embarrassed with her husband’s behaviour and hides him away.

They live a very isolated life and don’t have many visitors.

It was a great challenge for me to be accepted but gradually over the last year I have built up a wonderful relationship with this local and loyal couple. I have managed to make a connection with the husband speaking about cutting peats, fishing and growing corn on the croft he was brought up on.

My greatest discovery was on one occasion when R’s wife J set about to make tea, I asked him if he knew the Gaelic translation for “put the kettle on”, he instantly gave me the translation.

I went on to ask sentences like, “lets get the cows in for shelter, have you got the peats in for the fire” [activities he might have done in his early days]. He instantly returned the Gaelic translation. I was amazed and congratulated him saying he was going to be my Gaelic teacher and I would take notes every time I called.

He was so pleased and by his expression and huge smile I knew he at felt useful and worthwhile. My heart swelled at his reaction. His wife J giggled in the background and she too could not believe how he had reacted. We now have regular teaching sessions which we all love.

J told me that her wedding ring had fallen off her finger the day before and split in two. She was very upset and told me it had not been off her finger for 63 years. With her permission I took it to the jewellers in town and brought it back once it was fixed. J was delighted to have it back with her.

I explained to R what had happened. He didn’t seem to understand but I asked him if he remembered proposing to J. He smiled and it was obvious that seeing the gold band in his hand brought back memories. I asked if he would mind if I took a photo of him putting the ring back on J’s finger again. J giggled and he smiled as he placed it back on her finger.The following visit I gave them the photo.

It’s moments like these that make this job so special for me. I am so lucky to have been given the chance to share in families treasured memories and sometimes to dig a little to kindle a memory that brings back wonderful times they shared.

I am lucky to have had the 15 years experience in a care home which allows me to use my knowledge to discuss at the right time what supports they might prefer in the future and to advise on the range of options such as one-to-one, daycare, or residential care that might be available.

What kind of help can you provide to younger people with Dementia?

We are able to offer the same support for younger people in the Community. NHS Scotland in partnership with Alzheimer Scotland have created a resource pack for younger people with dementia to help access support and accurate information about dementia. The sad thing is there are no peer support groups for younger people in the area. We can offer a befriending service which is based on befriending by telephone.

Once a care manager has made an assessment, self directed support [SDS] can also be a way for any individual to get help to put together a package of care which suits their needs and the way they want to lead their lives.

I believe younger people feel more isolated and are heavily dependent on their families for intensive support as the illness progresses. They may have to give up work and loose valuable connections.

I support a young woman with a dementia who hates to go out .Her mobility has been affected and she often trips. She is not worried so much about falling but that people will think she is drunk. She told me she would rather people spoke to her about her illness rather than try to avoid the subject but not many do. She has withdrawn, feels anxious about people calling so I support her with texting, and phone conversations. I have chatted to her friends about the effects of dementia on a person and encouraged them to keep her included.

With the help from my Manager for Alzheimer Scotland Kevin Lawely based in Skye, and Joe Taylor CPN, I plan to roll out dementia awareness sessions round the Communities in Wester Ross.

That sounds great, let people aware and work together with the Communities.

We need to get dementia awareness spoken about in our Communities, to take away the fear and stigma of the illness, to share experiences from people with dementia and their families to find out what would make a difference for them so that together we can make it easier for everyone to live a quality and fulfilling life.

We want to talk about dementia, what causes it, risk factors, symptoms, diagnosis and treatments. Everyone should have access to free, accurate and up-to-date information about dementia.

We hope to target these sessions at schools supermarkets, banks, shops and cafes to give a better understanding of perhaps why someone is struggling to count out the right money or trip up for no apparent reason, skip the queue or become agitated.

We need to enable people with dementia to be part of their Communities and to do this we all need to play a part. This might mean making sure that someone is still welcomed at an activity group, place of worship or club, or that a helping hand is offered to anyone who appears lost or frightened. It could mean small changes to the environment to make it safer by better lighting or easier access.

What are Dementia Friendly Communities?

A dementia-friendly community should be a place where people with dementia and their carers are given assistance at home earlier, reducing the risk of falls fractures or urinary tract infections and help reduce stress and fatigue in their carers. This could mean less hospitalisations and the ability to remain in their own homes for longer.

In figures, a year living in the community with dementia is estimated to cost £24,128.

A year in residential care costs an average of £35,424. So, for every person who is able to live at home rather than in residential care, there is a saving of £11,296 per year. With this in mind dementia friendly communities could delay admissions to residential care saving millions every year.

We need to make our Communities as dementia friendly as possible so that people with dementia and there carers feel confident, understood, respected and included in all areas of life.

I plan to set up Carers groups so people can share experiences, get advice and know they are not going through their journey alone.

Are there any specific unit to look after people at the last stages of Dementia and palliative care?

There are specific Units for people with severe dementia but they are based around Inverness, over 60 miles away, making it difficult for families to visit regularly.

Dementia is still a taboo. From your experience, what is the impact of this feeling in someone with dementia, their family and community?

In my experience, People with dementia feel that they can’t make a contribution to their Community or don’t know how to. There is an enormous sense of low expectatition and self belief. Although they may want to do more, people feel restricted by their condition or health. They lack confidence, worry about getting lost, doesn’t want to be a burden.

People have a fear of dementia. They feel awkward, embarrassed and impatient when attempting to communicate and connect with people with dementia.

The experience can also be frightening, confusing and challenging; along with the incredible sadness carers feel as the think back to memories of the past and fear what will happen in the future. That in itself brings a certain degree of guilt and the understanding that a parent or loved one will never be the same again.

A recent poll also shows that dementia is now one of the most feared conditions for either a loved one or the individual to develop.

Kitwood [1990] expresses what he feels the “unattended dementia” might be like and for me I think he describes it flawlessly:

“Everything is falling apart, nothing gets completed, and nothing makes sense. But worst of all you know it wasn’t always like this. Behind the fog and darkness there is a faint memory of good times, when you knew who and where you were, when you felt close to others, and when you were able to perform daily tasks with skill and grace; once the sun shone brightly and the landscape of life had richness and pattern. But now all that has been vandalised ruined and you are left in chaos, carrying the terrible sense of loss that can never be made good. Once you were a person who counted; now you are a nothing and good for nothing. A sense of oppression hangs over you, intensifying at times into naked terror; its meaning is that you might be abandoned forever, left to rot and disintegrate into unbeing”.

What do you recommend to people who are reading your testimonial and they already suspect that they themselves or a relative can be experiencing the first steps of Dementia?

I would say to them that most of us forget things every day ,sometimes there are times perhaps we walked upstairs forgetting why, or forget people’s names, where we left the car keys, but this is not necessarily a sign of dementia.

In dementia, memory loss is more serious than forgetting things occasionally.

I would advise people to talk to their GP if memory loss is interfering with everyday life or getting worse.

Problems with everyday tasks, like forgetting how to prepare a meal, personality changes, disorientation, could suggest early signs of dementia.

They can be caused by other conditions so it’s best to check.

I would also say that if people are at all worried or confused, they are entitled to a timely assessment and diagnosis. If they are given a dementia diagnosis this gives them time to plan their lives well, so that their hopes and wishes are being followed and put in place. I have seen the relief when people get a diagnosis. At last there is an explanation for how they feel.

There is a key worker out there out there who will help you to understand the diagnosis, and hopefully take the fear away and give you hope. They will be there to support you through your journey and signpost you to services that are available. They will be “your friend”.

What have you learnt after your first year working in the Community?

The last year has demonstrated the need in Wester Ross for a more comprehensive Post-diagnostic provision and I feel that my experience so far has been an ideal preparation. I have a heightened awareness of the particular issues that people face in this area, as well as clear knowledge and regular contact with the local professionals and agencies.

Working in different care settings has made me able to assess and respond helpfully in a wide variety of situations. I see myself as calm and decisive under pressure.

I have been able to increase my skills in the field of dementia and gain invaluable experience in providing the information, guidance and support that newly diagnosed people and their families require.

Notable achievements in the last two years have been a capacity building project with the local churches and mapping all the latest resources in Wester Ross, which includes arranging homed visits for dental care for people who have difficulty leaving their homes. I am in the process of working with my service manager to develop and roll out dementia awareness sessions for local businesses in the area.

I feel that given the projected increase in need for support in the community I would hope that my role as dementia link worker continues.

Would you like to share anything else?

A couple of weeks ago I was successful in the interview for post as part time dementia link worker for NHS Highland covering Wester Ross.

The job is permanent and along with my part time Alzheimer Scotland dementia link worker role will take me up to a full time post.

I am delighted to be offered this post as I feel I can make a real difference to the lives of people living with a dementia in the community of Wester Ross.

This opportunity will give me the chance to develop my role further, to take on more cases, concentrate on life story work and support people past the one year period.

It will also give me time, to support people before a definite diagnosis, allowing me to build up relationships and accompany people to clinics for assessing for diagnosis.

I can now say in all honesty that I have found my true vocation and I will connect with people and base my person centred care around the words quoted to me recently from someone with dementia:

“It’s not what you say to me, its how you make me feel, your smile,your touch are what I connect with.”


“Be kind to me for each day of my life can be a long, desperate struggle. Your kindness may be the most special and important event of my day.”

 * * *

Dear Readers,

A colleague told me recently that Christine represents the paradigm of a personalized, generous and kind care for the elderly. That is what ultimately makes the difference for each individual.

Dear Christine, Thank you very much for this lovely journey through this beautiful, unique land and people of the west coast of Scotland. Thank you for sharing all the good work you have been doing to improve people with dementia lives.

Your testimonial is a treasure for the blog, and hopefully, a seed of awareness for our communities.

Congratulations! We wish you all the best on your journey!

Elena Lorente Guerrero

17th of May 2015

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