Dementia Care Interviews

For 2016’s #DementiaAwarenessWeek Bright Selection conducted interviews with top care professionals about their opinions and insights into caring for those living with Dementia. Find out what they had to say…

The 15th-21st of May 2016 is Dementia Awareness Week, and in aid of this, we asked our consultants to get in touch with a professional within the care industry that would be able to offer unique insights into dementia care from the front-line. They came back to us with several brilliant interviews that we feel give a truthful perspective on caring for those living with dementia and their families.

Our interviewees include Laura Hill, Dementia Specialist & Occupational Therapist for the East London Foundation; Benn Mott, Home & Commissioning Manager for Athena Healthcare Group’s Parklands Lodge; and Tembi Hlalakuhle, Regional Dementia Lead for Sunrise Senior Living.


Our fourth and final interview is with Tembi Hlalakuhle, Regional Dementia Lead for Sunrise Senior Living, conducted by Emma Everett;

EE: What’s your current role?

TH: Regional Dementia Lead for Sunrise Senior Living.

EE: How many years have you worked with people who have dementia and their families?

TH: I have been working with people and their families living with dementia for 15 years.

EE: Which piece of training or experience has enabled you to become a dementia professional?

TH: Working with people with dementia has been the biggest training experience for me.  Especially working in a specific dementia setting with people who have very complex needs.  I have also been fortunate enough to commission a specialist dementia care home which cares for people at different stages of the progression of dementia.

TH: To support my work I have attended lots of training courses which have helped me understand dementia such as ‘dementia mapping’ through Bradford University. I have also completed the Virtual Dementia Tour which is an 8-minute experience where your key senses are taken away. You experience what a person with dementia might feel like and once you’ve experienced the tour the way you deliver care to someone with dementia will never be the same. This is something I will remember for a long time.

EE: What are the common challenges, concerns for families and the person living with the disease?

TH: Families are on a dementia journey with their loved ones and this is the biggest challenge for them. 1 in 3 people will care for someone with dementia in their lifetime.  Family dynamics may change and that can make things feel different.  There may be some family members that feel excluded from certain care decisions because of where they live, not living locally or because of other responsibilities they have.  Some family members may also experience feelings of denial if they don’t understand what is happening. There may also be practical challenges such as who has the power of attorney.

TH: It’s really important that care providers set up and facilitate support groups for families to bring people together to share experiences and support each other to cope. They are all going on the same journey. 

EE: How can we best support people with dementia and how does this vary dependent on the type of dementia someone has?

TH: It’s really important to understand the person first, it’s still the person you once loved and the person who has been part of your life for so long. Once we know that it’s easier to understand how we can best support them. Dementia is just part of a condition and it’s key to understand the different types. We need to know people’s life stories so we understand their past and can blend this with the care they need. It’s really important that people continue to live with a purpose day to day, that they are engaged in mind, body and spirit and can take part in enriching and personalised activities.

EE: What are the feelings that are often shared by relatives and how have you helped to manage/support relatives?

TH: Relatives go through a range of emotions; fear, denial, frustration, anger, guilt, helplessness.  The way we can help alleviate some of these is to involve them in the planning of the care for their loved one.  Asking them to provide life stories will really help and will allow them to picture and remember the person they are. Involving families in drawing up some personalised activities that their loved ones may like to do and they could do with them to keep that connection there.

TH: Providing training around dementia to families and holding regular support groups is really important. The support that families can get from other families is vast. Involving families in care review meetings every 6 months gives them the opportunity to talk about their loved one’s condition, how they are getting on, their progress etc. It’s really important to listen to families and enable them to express their emotions. Introducing social events such as cheese and wine evenings is a great way to bring families together in a more informal setting to build that support network. 

EE: Can you share a positive experience of supporting someone with dementia?

TH: I’ve been privileged to be able to share so many positive experiences over the years.  One that comes to mind is a lady that we admitted in one of our homes. The lady lived by herself in the community and her neighbours had raised an alarm that she seemed to be very distressed early in the morning and late at night. When we admitted her she was very distressed and as she had no immediate family, it was very difficult for me and my team to get her life story as nobody knew her. We eventually traced a niece who told us that she had spent most of her career working for British Airways as a flight attendant which was a really key piece of information for us in the planning of her care. She was used to getting up early in the morning to prepare for her flight, full of anticipation for visiting an exciting destination.  We were able to support her early in the morning by getting her a cup of tea and talking to her to calm her down. We also created a memory box for her and managed to get some pictures of her in her BA uniform which acted as a good navigational prompt to enable her to recognise her own room as she recognised herself in her uniform. This is a good example of someone on their dementia journey.

EE: How does support change throughout the life of the condition?

TH: The most important thing is to realise that each person’s journey is unique and it’s important to ensure a very detailed Person Centred Care plan is in place and reviewed regularly so that it reflects what is happening for that person at that time. Once this is clearly documented it enables continuity of care where everyone will understand what is going on.   It’s important to talk the family through any changes so they can understand what is going on. As change occurs and the condition progresses it’s important that there is lots of Multi-Disciplinary Team involvement such as Speech and Language Therapists where perhaps the person is starting to have difficulty swallowing or Occupational Therapists where there may be problems with mobility etc. When changes occur it must involve a team of people.

EE: What is the one piece of advice you would give a relative?

TH: I would ask them to hold on to the fact that their loved one is the same person they once were but on a journey. They must keep on connecting with them through reminiscence engagement. There are different ways to do this, individual rummage boxes are a great thing to use, full of different objects, pictures etc. Families and friends can use these to stimulate a memory to talk about with their loved one.

EE: What in your opinion is the future for supporting people with dementia?

TH: We need to go back to the National Dementia Strategy – training and early diagnosis is essential. I’m always surprised that there are advertisements on the TV on how to recognise someone has had a stroke and what to do but there is nothing yet on dementia. There needs to be one for dementia. We need to encompass dementia into the day to day lives of everyone so we can all offer support within our own communities.  We need to increase the amount of towns that are dementia friendly. We need to support people with dementia to continue to live life with a purpose.

EE: What is your ideal vision of dementia care?

TH: The ideal vision for dementia care is to put the person first and take the time to understand that person. Recognise that dementia involves everyone, family and significant others and bringing local communities together to learn about dementia. Early diagnosis and early intervention is really important to maintain a good quality of life. People must live in a dementia friendly community or environment and must be supported to live with a purpose, mind, body and soul. 

EE: What key factors can have a positive impact on the person living with dementia? Environment, activities, nutrition?

TH: All of them are important. As dementia progresses it effects certain aspects of health for instance food and nutrition. Peoples taste can change as can the ability to absorb certain goodness in foods due to the brains reduced capacity to communicate effectively to the stomach. Therefore, it’s essential that we continue to promote a positive dining experience for people living with dementia and support this by offering food that is rich in goodness, nutritionally fortified if necessary so that people remain as healthy as possible.

EE: What training/activities would you recommend for carers/relatives caring for people with dementia?

TH: Training on the different types of dementia and training on how to maintain effective communication throughout the dementia journey. It’s very important to be able to communicate effectively and read body language; how do you recognise if someone is in pain? Most important is a high quality end of life care plan for people living with dementia. 

TH: As I said before, the Virtual Dementia Tour is really important for anyone working with or supporting someone with dementia. Once someone’s experienced this tour the care they deliver will not be the same again.

EE: Thanks so much for taking the time to talk to me Tembi.

TH: Thank you for including me in your campaign Emma!


Our next interview is with a professional who wished to remain anonymous, conducted by Co-Director Julie Estall;

JE: What is your current role?

Anon: I am a Dementia Care Facilitator – My role involves providing support to homes to enable them to develop good practice in dementia care.

JE: How many years have you worked with people who have dementia and their families? 

Anon: I started in dementia care when I was 15 so 30 years.

JE: Which piece of training/experience has enabled you to become a dementia professional?

Anon: My overall work experience within dementia has been far more valuable than study or qualifications.

JE: What are the common challenges, concerns for families and the person living with dementia?

Anon: I still think one of the main challenges is getting the initial diagnosis and once that diagnosis has been received it’s then a challenge to get the right kind of support both for the individual and their families. Dementia affects the individual but also everyone else in their lives and finding the right support for everyone is still quite a big challenge. During my time training staff in care homes a lot of care workers tell me it would be really good if we could have more for the relatives, more initiatives. There is a lack of understanding about dementia and the support available.

JE: How can we best support people with dementia, how does this vary dependent on the type of dementia someone has?

Anon: I honestly think the best support we can give to someone is by understanding more about their own situation, understanding more about how dementia affects them as a person whatever type it may be. Understanding that everyone is an individual and developing that empathy. More money for the sector and creating more awareness. Dementia Awareness Week this year has been a good initiative and there has definitely been more in the media than in previous years.

JE: What are the feelings that are often shared by relatives and how have you helped to manage/support relatives?

Anon: Quite often relatives talk about feeling a sense of bereavement before that person has gone. A sense of loss of that person. It’s important to find the right support for relatives and also those relatives know and feel that there is support out there for them and that they are not alone.

JE: Can you share a positive experience of supporting someone with dementia?

Anon: Some time ago I used to work in a day care centre for people with dementia. On occasion we would organise a long weekend away for clients. We would hire a cottage in Wales and we would volunteer to take a group away. We would cook, all together, go on days out, it was a wonderful experience and they were lovely holidays. Even though it was work related it never felt like it. People that came just used to enjoy themselves, it was just lovely.

JE: How does support change throughout the life of the condition?

Anon: Support can change a lot depending on when a person gets their diagnosis and where they are in their journey of dementia. I am very lucky that I have worked with people at home who had no services, people supported by day care and also within residential dementia settings. I would say the focus definitely changes but this is also dependent on the person’s physical health. Day care is very much about keeping people active, enriching their lives and maintaining their skills and abilities. This should be an element for residential care which can sometimes place a precedence on their physical care over their psychological and emotional care.

JE: What is the one piece of advice you could give a relative?

Anon: To ensure that they look after themselves as well as the person living with dementia. This is really important.

JE: What do you think is the future for supporting people with dementia? What is your ideal vision of dementia care?

Anon: I would like to see the care home model gone. I think there’s got to be a better way than that. Residential care is almost the inevitable place that people end up living. There has got to be a different approach – dementia villages or some kind of group living but on a different basis. Ideally, most people would rather still live at home.

JE: What key factors can have a positive impact on the person living with dementia? Environment, activities, nutrition?

Anon: All of these and lots more as well! The key thing is the quality of the relationships that the person has with the people in their lives; all of the people in their lives. These should be loving, caring relationships. This is the key to good person-centred support. From a services point of view, the essential thing is good leadership. I have been lucky in my career to have had a few managers, and certainly one in particular, who were inspiring leaders – (that was the person who was the catalyst for the weekends away). Good leadership in care services is crucial; managers should be inspiring and really understand what good care is, leading their teams from the front and setting an example.

JE: What training/activities would you recommend for carers/relatives caring for people with dementia?

Anon: Everyone should start with good basic training in dementia awareness to understand what dementia is and how it impacts. Coupled with that they need the understanding that every person and their experiences are individual. We need to support carers to develop empathy.

JE: Thanks for taking part!


Our second interview was conducted by Neil Horwood with Benn Mott, Home Manager & Commissioning Manager for Athena Healthcare’s Parklands Lodge;

NH: What’s your current role?

BM: Home Manager and Commissioning Manager at Parklands Lodge.

NH: How many years have you worked with people who have dementia and their families?

BM: 27 years.

NH: Which piece of training or experience has enabled you to become a dementia professional?

BM: My Mental Health Nurse training, and additional dementia modules via Alzheimer’s Society. I’m also taking a Masters in Dementia Studies.

NH: What are the common challenges, concerns for families and the person living with the disease?

BM: For families, it’s a lack of access to information and resources and a difficulty with acceptance. For people living with dementia, again it’s about acceptance. The majority of people do not seek assistance for up to 2 years after symptoms emerge for fear of the social stigma. 

NH: How can we best support people with dementia, how does this vary dependent on the type of dementia someone has?

BM: By remembering that everyone’s experience and exposure to dementia is different. No one knows how the dementia will progress but it is making sure that everything is in place for when it becomes a serious interference in day-to-day life. Also, to focus on how we can make the life of the person living with dementia as rich as possible and to preserve the skills that person still has.

NH: What are the feelings that are often shared by relatives and how have you helped to manage or support relatives?

BM: Often there is a sense of desperation from family and relatives – they want the person that they love back. I have to try to get across to the family that the person is still there, but just not able to communicate as they used to – that they will still know who the family members are, but that they are just not able to get that across. It’s also important to get across that the family can build new memories for themselves that include the person living with dementia because the person that they know and love is still there.

NH: Can you share a positive experience of supporting someone with dementia?

BM: The most prevalent ones are related to being in a hospital or in a care home – the loss of mobility, incontinence, difficulties with expression. Anger and fear. What I have helped with is to help rebuild some independence – within 8 days we managed to get a lady back to being continent, with a hoist enabling her to move around. This gave her so much self-esteem back and her pride as well – using a hoist to allow someone to actually stand up, with the hoist taking the full weight, allows the person to have their feet on the floor and enables them to see themselves more as an equal.

NH: How does support change throughout the life of the condition?

BM: Support should always be there. Knowing when to step in, when to physically support, when to encourage etc. The person loses skills during the progression of the disease, so support, of course, has to intensify. However with this intensification, there is a need to make sure that the person feels like they are in control of their life and their choices, and to remind them of the person they are. There is also a need to assist in all aspects, right up to end of life care as well, as every individual deserves the right to live to the fullest right up to the end. Things that make an impact on this include lots of group activities and person-centered care.

NH: What is the one piece of advice you would give a relative?

BM: Positivity rubs off. If you are positive you will find that people around you are positive as well.

NH: What do you think the future is for supporting people with dementia?

BM: Ideally dementia friendly communities, and more services to keep people in the community. Perhaps a dementia awareness day each week. Supermarkets are not equipped at the moment to deal with such things, but dementia is a disability and it should be made a legal requirement for dementia accessibility to be a focus of accessibility laws. 

NH: What is your ideal vision of dementia care?

BM: Everyone living at home until the last possible moment. 

NH: What key factors can have a positive impact on the person living with dementia? Environment, activities, nutrition?

BM: I think they need to be in a place that makes sense and feels safe. They also need access to good valuable information and good therapy options. The main thing is that every interaction needs to be on an equal basis because we are all the same.

NH: What training/activities would you recommend for carers/relatives caring for people with dementia?

BM: Dementia Friends skips over things too fast in my opinion. Perhaps a dementia awareness session, which I do myself. Often people need help to understand how the brain works, how memories work, and about brain function, to understand how dementia affects the brain. Everything we have ever done, ever been and ever learnt is all a blueprint in the brain as a memory.

NH: That’s brilliant Benn, thanks so much.

BM: No problem!


Our first interview was conducted by Catherine Martin with Dementia Specialist & Occupational Therapist Laura Hill;

CM: What’s your current role?

LH: My job title is ‘Dementia Specialist/Occupational Therapist’ for the East London Foundation. I deliver training and reminiscence as part of a project.

CM: How many years have you worked with people who have dementia and their families?

LH: I’ve been working in the sector for 23 years.

CM: Which piece of training or experience has enabled you to become a dementia professional?

LH: Completing my master’s degree in dementia, and my years of experience.

CM: What are the common challenges, concerns for families and the person living with the disease?

LH: For relatives, it’s often a fear of what is next, of not being recognised. For the individual, it’s the fear of getting it wrong or not being quite themselves.

CM: How can we best support people with dementia, how does this vary dependent on the type of dementia someone has?

LH: Try to listen rather than to challenge; be authentic so they are familiar with you; validate them to attract knowledge; be honest but not blunt; don’t lie; stay loyal and look at their strengths.

CM: What are the feelings that are often shared by relatives and how have you helped to manage/support relatives?

LH: Guilt is a huge feeling in relatives. Feeling they are not doing enough or that what they are doing is wrong, and accompanying this is often a fear of being judged for doing the wrong thing. They’re also often really stressed, and can feel like they’re not being listened to.

CM: Can you share a positive experience of supporting someone with dementia?

LH: I was sitting speaking with someone who was speaking about their past, and another person came over and asked ‘is she one of us?’ (Asking if the person I was initially speaking to also had dementia) – This was lovely, as by just listening others could join in and understand and feel part of the conversation.

CM: How does support change throughout the life of the condition?

LH: For those whose partners live with dementia, you become a nurse or carer rather than spouse, it changes from a partnership. You have to remember that if speech goes then replace it with something else so you can still communicate, and don’t be offended if they forget something or someone.

CM: What is the one piece of advice you would give a relative?

LH: Let people continue to be who they are, don’t drag them forward or backwards and don’t try changing them. Let them be who they are and support them.

CM: What do you think the future is for supporting people with dementia?

LH: I think it will get harder – less support for carers due to all the cutbacks. People will rely more on charities or benefits due to money shortages.

CM: What is your ideal vision of dementia care?

LH: People having freedom, a meaningful occupation and be respected, valued and have equal rights. You should be able to continue to love rather than being pitied.

CM: What key factors can have a positive impact on the person living with dementia? Environment, activities, nutrition?

LH: Retaining some sort of role in society or the community is key and not being judged; still being seen as a person rather than a condition or someone that has to be managed.

LH: Nutrition – Healthy heart healthy brain. But rather than being told you can’t have certain things, like when you have diabetes you have to give up cake and replace it with a rich tea, you still need to have nice things!

LH: Activities – I would love a place where residents can go and do everyday tasks like housework or art – Care homes should allow people to still do everyday tasks. Be able to actually go to church then your soul is fed, mind is fed rather than being ‘warehoused’.

LH: By doing this it still gives you a meaningful life. If you were an accountant you should be able to take your ledger books as this was your life, an artist should be able to take their materials. It’s about having things around you that you loved before dementia.

CM: What training or activities would you recommend for carers or relatives caring for people with dementia?

LH: Relaxation as much as possible and keeping active, seeing friends and not feeling guilty for getting out. Often carers do not want to go out as they feel it’s depressing or they feel guilty for it.

LH: When I lived in New Zealand I ran a group with Alzheimer’s Society for carers to be able to get away. It was 3 nights in a boutique B&B. Respite care was arranged for their loved one and the carers were given relaxation therapy, additional information and enjoyed long walks. It was a great experience and people loved it, but one year we sent the invite out to 100 carers and no one wanted to attend as the feeling of ‘guilt’ was too much. 

CM: That’s all, thanks a lot Laura!

LH: Thanks for including me!