For a moment let’s focus on people.  Like trees, our lives are shaped by the people who surround us. Our relationships and connections give us a sense of purpose and meaning. In care settings we are particularly vulnerable, and this grounding sense of relationships can become lost.  It is important to ensure every interaction we have creates connection.

So, let’s tell a story…

There are three types of people in life: the leaf people, the branch people, and the root people.

Leaf people come into our lives for a reason or a season. They bring colour, comfort, and teach us lessons for a time, but when life’s winds begin to blow, they can drift away. We can still appreciate them, their value, their warmth and their gentle presence, but they are not necessarily permanent features in our lives.  The leaf people remind us to value each connection, however brief, and to find meaning in moments that may be fleeting.

Branch people are stronger and have a stabilising influence. They help us grow, providing structure and support when we need it most. They are important and a staying presence in life. These are the people who walk alongside us for a while but may bend or even break overtime. Their presence teaches us resilience and acceptance. Branch people might be colleagues, mentors, or friends who support us through certain chapters of our lives, shaping who we are along the way.

Root people are truly special. They are the ones who stay no matter the season. They ground us. They don’t seek attention, praise, or reward, they simply hold us steady, nurturing us. When times are hard, they draw close rather than turn away. Root people are those who see beyond the circumstance, the diagnosis, or the role. They connect through love, empathy, and shared humanity. Their strength doesn’t come from what they do, but from who they are.

What kind of person are you?

We all agree that as people who work in health and social care settings our interactions are for a reason and a season, they also provide structure and stability in times of uncertainty.  This is great as a foundation, but emotion focused care is grounded in kindness, compassion, and genuine connection. It’s not about ticking boxes or completing tasks. It’s about presence, creating a sense of belonging where people feel safe, valued, and seen for who they truly are.

The people who make the greatest difference are not the ones with the most recognition or status, but the ones who take the time to listen, to encourage, and to love without condition. These are the roots we need to nourish, nurture, value and support people to truly be ‘free to be me’.  Because in the end, it isn’t what we ‘do’ that defines us. It’s the depth of our connections. When we choose to be someone’s roots — we help the whole forest grow stronger.

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Try to imagine a house that’s not a home. 
Try to imagine a Christmas all alone.
The only things I see
Are emptiness and loneliness
And an unlit Christmas tree.

Songwriters Jeremy Lanning, Michael Chapman, Nicky Chinn. Song by Mud

It is no surprise that for those who experience loneliness in their lives, Christmas can be a particularly difficult time of year.  Everything on the television, in the shops and in the general collective conscience seems to be telling you that this is a time of great happiness, families coming together, huge excesses of food and gifts being given and received.  But what if you have no plans for December 25^th, and the Turkey dinner for one is not looking very appealing?

You can of course experience a sense of loneliness at any age, but many older adults, who have lost their spouses, or whose families have moved away, are perhaps more likely to find themselves spending longer periods of time on their own.

My mother lost her beloved husband living with dementia in a care home over 4 years ago.  She never complains, but she does sometimes admit that when I am leaving after a visit, the house suddenly feels very empty and quiet.  She is grateful for the companionship of the radio and the television, but says that in the winter particularly, the day feels very long when there is nothing in the diary.

Loneliness is not just experienced when you are on your own.  Being alone and being lonely are two very different things, as many people can enjoy great contentment being on their own. Perhaps one of the worst feelings is when you are surrounded by other people, but you have a profound sense of not being particularly connected to them.  You go through the motions of putting on the Christmas hat or pulling a cracker, but your heart really isn’t in it, because it isn’t where you want to be.  John, a man living in a care home told me that Christmas reminds him of all he has lost.  He sometimes says he is overwhelmed by memories of when his children were little and the excitement of opening their stockings together.  He also remembers his own family Christmases when he was small and can picture his mother standing in the kitchen stirring the Christmas pudding.  John says that whilst he wants these happy memories to be a comfort to him, he sometimes pushes them aside, as they leave him feeling the painful contrast of his current Christmases with what he describes as a “group of kind strangers.”  Like my mother, he doesn’t grumble, but there is a sense of sad resignation that this is the reality for so many people as they age.

So, what can be done to make this better?  We cannot bring back people’s younger selves, their lost parents and spouses, and we can’t pretend that Christmases will ever be quite the same.  However, for care teams working in care homes, our role as ‘kind strangers’ is still very important.  We can find ways to lessen the sense of loneliness for individuals we support through moments of affection and laughter.   We can find out what a person’s favourite food, song or film was and surprise them with a treat.  We could help people contact a family member or old friend through the power of technology.  For some individuals, helping them do something for someone else who isn’t having an easy time can help, such as donation to a children’s charity or adopting an animal through the many rescue and wildlife charity schemes.  

But the most important gift we give people at Christmas is our time.  When we stop to sit and chat, or pick up a phone to talk to a relative living alone at home or in a care home,  this is the ‘Gold, Frankincense and Myrr’ of the festive season.  For that small moment in time, at least, we are saying to that person, “I’m here for you. You are not alone.”

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Now teaching others about dementia, I have thought more about the psychological needs of Tom Kitwood captured by the now iconic ‘flower’ image. Kitwood invited us to think more about how we can focus on meeting psychological and emotional needs, which are important to all of us as human beings but are likely to be even more enhanced if our cognitive abilities are failing us.

What do most of us want from an average day? I believe it’s a combination of normal everyday experiences which root us in a sense of place and safety, plus some variety in the day which, as the saying goes, is ‘the spice of life.’ Most of us thrive on some movement and exercise and opportunities to feel busy, purposeful, and useful to others. Many of us like to feel needed, appreciated, and loved. We might enjoy companionship but also need relaxed time to do our own thing. Treats and fun can also bring some joy. When thinking about the experience of living in a care home or being in hospital, many of these things are less easy to access. We are literally uprooted. Our psychological stability is turned upside down not just through dementia, but through losing so many of the things we take for granted living in our own homes. How can we support visiting family members to bring some of these things to people?

Here are some ideas for things to do that connect with each petal of the flower – identity, comfort, attachment, occupation, and inclusion.

IDENTITY

We often rely on close relatives to know the most about what defines their person’s identity. Is it their role as a parent? Was it their job? What kind of personality do they have? What were the key events in their life that helped shape them? Is their nationality, culture, or religion important? Knowing the answers to these things can help give ideas for things to talk about and do. Perhaps a relative has photographs of things which will remind the person of their achievements and restore that sense of pride and identity. Some people’s identity is reinforced by having pride in how they look. A family member might know the hairstyle the person prefers, a favourite perfume or aftershave, or the accessories the person enjoys – a particular tie, some earrings of sentimental value etc.

COMFORT

To be comforted when we are feeling vulnerable is core to our wellbeing. There are many ways to bring comfort, whether it is holding someone’s hand or bringing in a small child to play or a dog to stroke. A visit from a family member can be a huge comfort to the person. Encourage relatives to do things together which might offer comfort – this could be listening to music, singing, saying a prayer, or watching birds in a garden.

ATTACHMENT

People’s attachment needs relate to what helps them feel secure. These are often associated with babies and children in their early life but can also become more pronounced with the effects of dementia. Insecure attachment can present in a variety of ways, but often shows in very anxious behaviour, repeated questions, and sometimes frequent phone calls. Family members might need to give a lot more reassurance to the person who is experiencing insecure attachment. Telling the person that they are safe and they are loved is the obvious approach. But be aware of other things which can create a sense of security – for some people having access to a handbag or some money in their wallet for example (even if cash isn’t actually needed). A doll or soft toy can also provide both comfort and a sense of attachment. When someone talks frequently about their mother or going home, relatives need support to understand that this is expressing a feeling of wanting attachment and comfort. Being told that mother is no longer living is an easy trap to fall into, so families may need some sensitive education to not correct the person, but instead respond to the feelings behind the words.

OCCUPATION

Boredom is one of the most frequent problems for those living in care homes. Relatives need to be creative about finding things to do when they visit. Bringing things in to occupy the mind such as word searches or a crossword puzzle to do together is a possibility for those who are still able to do these. For those in the later experiences of dementia, reading to the person, whether from a newspaper, recipe book, short stories, or poems, dependent on the interests of the individuals, can work well. Rummaging and sorting through a box of fabric, tools, or postcards might be worth a try. Families and friends can also bring in something to do that the person could watch i.e., knitting, crocheting, drawing, or writing a card to someone that their relative or friend knows. Encouraging the person to go for a walk ‘round the block’ and sitting in a different part of the building or outside in the garden for a tea or coffee can provide a welcome change of scene.

INCLUSION

Many of us benefit from a sense of belonging to a family or a community. A relative or friend can provide a vital link to the person’s sense of feeling included. Making video messages from faraway friends or children or grandchildren can bring ‘family’ to the person. If the person has been part of a church or sporting community, what are the ways in which you can help them still feel in touch with those people? This might involve inviting someone to visit or, where possible,  taking a trip out to the church, golf club or other significant place.

We can help families understand their vital role in meeting emotional and psychological needs, and at the same time acknowledge that there are complex emotions involved when seeing the changes in the person they love, so it isn’t always easy to feel confident in trying new things out.

The National Association for Providers of Activities for Older People (NAPA) has produced two helpful free resources – ‘Meaningful Visits’ a Toolkit for Activity Providers and A Guide for Friends and Family, which offer many inspiring ideas and suggestions. https://napa-activities.co.uk/services/resources/free-resources

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I am the Essential Family Caregiver (EFC) for my wife who resides in a person-centred care facility operating with the Butterfly Approach to care. She is living with dementia and has been living there for almost 3 years. Over time, her dementia has progressed and given me the opportunity to, not only gain personal growth in how I respond and take care of her, but also to observe how a person-centred approach adapts and evolves as the manifestations of her disease deepen.

First, I want to stipulate that I am an avid believer in, and advocate for, the Butterfly Approach to care. It has all the hallmarks of person-centred care, which reflects the dignity and individual needs of the resident, as well as respecting and supporting family throughout the entire hierarchy of the facility. This approach is evident in the attitude and personal care that staff provide to her daily. The openness of the administration to engage in meaningful conversation with me, her Essential Family Caregiver, on how best we can work together to provide my wife with the best individual care possible, reinforces that person-centred care works.  Here are some examples of what I mean.

It is not at all unusual to see staff members kneeling, hugging, comforting, and caressing residents when they are in distress. One will often hear various comments that reinforce the adage “I am here with you.”

There are no uniforms, so staff and residents look like they are a normal family which enriches the feeling of a home atmosphere.

Everyone eats together like a family, unless of course, there is an outbreak.

Staff also read to individuals, enjoy games together and just sit and talk with them, not at them! Staff often bake various dishes and work in the garden with residents. When the baking is complete, or the produce from the garden is ready for harvest, the results of their work are shared with residents and even the Family Caregivers.

Birthdays and anniversaries are celebrated as any family would. Regularly, the celebrations are elaborate with room decorations, special foods, linen tablecloths and napkins, fancy tableware, and many other trimmings.

Family Caregivers frequently see a staff member with an individual living in the home strolling down hallways or in the garden, arm in arm. Sometimes you see them holding hands or hugging a resident who is in distress. This is just how a family would behave.

During the early stages of the pandemic, when families had limited access, special pillows were purchased having the face of a loved-one, usually the image of relative, imprinted on it to help keep their memories alive. Perhaps this may be considered a small gesture to some, but to me, it reinforces, just how important it is to treat a person like a person. This benefits both the resident and the family caregiver.

Staff do special things like bring in fishing rods for an avid fisherman or marshalling sticks for someone who spent a great part of his life guiding airplanes to their docking locations. They hold accounting meetings for residents who have that background. They even dress mannequins with fine clothes for those who had a career in the fashion industry.

I must say that there is considerable effort to reduce the use of antipsychotic drugs, by replacing them with person-centred care principles and procedures. This is evidenced by reduced inappropriate or difficult expressions of emotion and behaviours.

As her husband, it is really uplifting to be acknowledged by administration and all staff that we are essential to the well-being of our loved one. They also genuinely inquire about my health and well-being. This makes me feel like I am a very important part of the care model at this facility and being recognized for it, makes me feel part of the family.

All essential family caregivers are not identical. We come from different backgrounds and have various forms of expertise. Much of that expertise can be applied to person-centred care principles; however, the most effective caregiver will be the person who tries to be educated in the field of dementia care and its delivery. As in life, effective communication is a “two-way” street, and it is absolutely necessary to good care. In my circumstance, I consider myself to be very fortunate, given what is known about how other Long Term Care (LTC) homes do not operate and engage with residents and essential family caregivers in a meaningful way.

One final thought! Butterfly homes must meet a robust set of standards before a home is designated to be a Butterfly home.  They are also required to maintain those standards on an annual basis to continue operating as one. I have seen those standards and most importantly, the philosophy which guides how they operate. I have to say I am thoroughly impressed. So far, I have not had any issues in trying to fulfill my role, which speaks volumes about the openness and willingness to consider us as true experts in our loved-one’s care. It is also important to know that we may not always understand the process of care and limitations placed upon LTC homes by government. This too, is part of the learning process for us as Essential Family Caregivers.

In closing, my experience with person-centred care has been very positive and I attribute that to the use of the Butterfly Approach to care, coupled with the competence and care of the entire team at the home. No one system is ever perfect, and at times, I have encountered challenges and disagreements that took time to resolve. Nevertheless, I would not want my wife to be anywhere else, nor would I want to engage with a LTC facility that has even the slightest reduction in competence and performance. 

Perhaps this best sums it up: I can go home at night and sleep knowing my wife is in good hands.  I trust them as I feel that my wife and I are part of a caring and larger family.

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People with dementia understand far more than they have ever been given credit for.  Take care what is said in their presence and don’t exclude them from conversations or decisions.  Exclusion of any kind can produce anger.

Bossiness is just NOT on! It’s very easy to confuse ‘caring’ with ‘controlling’ and nothing winds up any one of us more than the sense that someone else is controlling our lives.  And if the person we’re caring for can’t find the words to protest, then resistance or aggressive actions will ensue.  So, walk away, try again later or distract with music of the person’s taste.

Ask the question, ‘Who is it a problem for – us or them?’ If it’s us, we should old and ugly enough to let things ride.  Does it really matter that he wants to go to bed with his trousers on, eats mashed potato with her fingers, says there are little men in the garden?  Don’t scold, argue, contradict or try to make things “normal” again – you’ll only exhaust yourself.  Go with the flow, however bizarre it seems.

Preserve the person’s autonomy for as long as possibly by giving them choice (e.g. what clothes to wear – offer a choice of two garments).  Celebrate what the person can still do, rather than bemoan what they can’t.  Is the bottle half full or half empty?

There’s nearly always a reason for perplexing behaviours – often something/somebody in the environment or events in their past history. Try to spot the cause or the trigger and change it if possible.  84% of people with dementia misinterpret what they see in the environment.

If they can’t enter our world, we must enter theirs and affirm it.  Be prepared to time travel backwards into their personal history and enjoy fantastic adventures with them in their ‘real’ world instead.  If we have to indulge in a few evasions – such as answering “I need to go home and make the children’s tea.” With “What’s their favourite?” – when was it a sin to make someone happy?  Failure to recognise an older family member, or confusing generations may be because the person with dementia is living in their head many years ago.

Look behind the illness and reach out to the frightened person still in there who needs to feel secure, respected and cherished.

Barbara Pointon, MBE, music lecturer and dementia campaigner. cared for her husband, Malcolm with dementia and documented their life together in two television programmes Malcolm and Barbara: A Love Story (1999) and Malcolm and Barbara: Love’s Farewell (2007).  She developed dementia herself in 2018 and died in 2020 in a care home following the Butterfly Approach principles.

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Support for carers often focuses on processes to ensure adequate funding, respite care and counselling support.  These are all important factors for consideration.  Through our own personal experience and engagement with our care partners, Meaningful Care Matters has increasingly found that many family caregivers, particularly with the transition of their loved one to long term/permanent care home have many queries in relation to person centred dementia care. 

In recognition of this unmet need, and as an addition to our Butterfly Approach® model of care, Meaningful Care Matters has developed a program for carers called Meaningful Me and You. 

When you care for someone else, it’s easy to lose sight of your own health and wellbeing.  In some cases, the focus on caring for others results in losing what has meaning and what matters for you. Meaning and mattering is more important than ever.  Meaningful Me and You provides support and up-to-date, relevant information in a group environment, where carers can share experiences.  The program is run in a series of sessions which offers carers the opportunity to share experiences in a confidential and friendly environment with others in a similar situation.

The program consists of the following sessions:

• What is Dementia? A short synopsis of what dementia is and how this impacts life, particularly with the various phases and types of dementia. 
• What does living life with dementia ‘Look, Sound and Feel Like’? This module is stories of people living with dementia and carers of people with dementia talking about their lived experiences and how life looks, sounds, and feels as they journey through living life.  It is practical, emotional and is based on lived truth.
• The art and heart of caring.  This module focusses on aspects of how to care both practically for the person you support as well as maintaining an emotional connection. 
• Communicating with meaning when it matters most: The art of communication is always there, the way we communicate with each other may change and this module looks at how we can continue to communicate in a way which is meaningful.
• Ways to spend time together: This module will look at how do you continue to create activities of meaning and engagement, what this could look like and how to make it a reality as a part of everyday living.
• Making Sense of Difficult Situations: One of the greatest challenges is the perception of behaviours which cause frustration and increased stress for people caring for someone living with dementia.  Meaningful Me and You will look at the way we can approach this differently and strategies to de-escalate and understand the feelings behind the response, thereby meeting that need.
• Focussing on You and Your Needs: You are important, you matter and the most important strategy and support system to continue the caring journey is to ensure you make the time to focus on you and your needs.

The key benefits of Meaningful Me and You for family carers includes:

• Restoring individuals’ sense of meaning and purpose through connecting with other carers as an outlet of support
• Building support networks
• Learning from personal responses and emotions and how to integrate these into positive outcomes for the challenges faced in caring for someone with dementia
• Loving the person where they are at whilst continuing to love ‘myself’ for the way my love and relationship changes throughout the dementia experience
• Enhancing understandings of complex situations and needs
• Improving my mental health and wellness whilst learning strategies to reduce my stress.

Supporting family carers and fostering collaborative partnerships is in the best interest of health and social care providers as well.  This program can be facilitated at care homes and in the community.  Ideally in person is best, but there is also the option of facilitating online as well.  If you would like to know more about this innovative new program, please contact us on admin@meaningfulcarematters.com

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I have a Christmas Eve tradition of sharing a Facebook post, reflecting on the year (including my work as a dementia care trainer/consultant) and remembering those who will be absent from the table during the festive season, following bereavement.

I see this through the prism of celebrating lives lost. However, as I age, the list of names seems to grow – particularly those whose dementia journey has ended.

We are all different, so loss can feel like an intensely unique experience.

The Loss Spectrum

Carers of people with dementia (relatives/friends/significant others) experience a kaleidoscope of losses:

• initial diagnosis
• progression of their loved one’s illness, sometimes perceived as that person ‘disappearing’ or ‘no longer the Mum I remember’
• transition into residential care – one daughter told me “This was the worst day of my life”
• ‘she/he no longer recognises me as their partner/spouse/child etc.’ – perhaps, the most painful of experiences
• their loved one’s death

Indeed, over many years of working with carers of people with dementia, I’ve heard the expressions – “it’s like the longest bereavement” or “it’s a constant grieving process” – countless times.

Examples of loss can feel profoundly personal and unique for individual carers.

Patience’s journey began with supporting her husband through his acute anxiety during his forties, a later diagnosis of Parkinson’s Disease, then Parkinson’s-related Dementia and his recent death.  Her story is a long one with many different losses and stresses along the way.

In the Rainbow Memory Café for older LGBT+ people who have dementia and their carers, Christopher, recently shared how he is still coming to terms with the death of his husband with whom he had lived for 40-plus years. Unlike many others, he’d felt supported by family and friends, yet the sense of loss remains overwhelming: “immediately after Joe died, all the professionals went.”  It is not uncommon for relatives to describe this sudden shift of a busy home with lots of visitors to so much more silence and hours of time in the day to fill.

Meanwhile, Kate has been experiencing the anguish of her mother Jenny moving into residential care, trying to ensure she has prunes for breakfast, as she knows Jenny best and that this is important to her.  

Many families have to navigate developing positive relationship with care staff and want to make sure their relative has what they need, but are worried about being labelled as difficult or interfering.

Unique or Universal?

It is often those ‘simple things’ – laying a second place at the table and then realising that our loved one is no longer there or feeling vulnerable and in need of a loved one’s holding hand or hug.

Such moments of personal grief and emotional pain, I’d suggest, are actually universal feelings when dealing with loss, including bereavement.

Loss and bereavement remain taboo topics for discussion, despite being a certainty of life. Their mention simply reminds of our own mortality and difficult feelings. The emotional pain of bereavement is not something we ‘get over.’ Rather, it is a reality of life that we can only hope to adjust and adapt to.

Nevertheless, as light follows darkness and spring follows winter, we can still remember and celebrate lives. My mother and father-in-law both died in 2020. For Christmas 2022, on behalf of the family, I donated to have 5 trees planted in their memory. Hopefully, a symbol that whilst they are no longer ‘at our table’ our love for them remains.

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