Three of my grandparents lived with dementia and it’s over a year since my dad died from it. I want to share what my experiences with them have taught me, particularly in terms of visiting heritage sites which Dad loved.
Dementia can be a demanding illness to understand because of its diversity. I’m hoping that the following blog will be a useful starting point, particularly if you’re new to the subject but are keen to make your service more accessible. Part 1 introduces ‘dementia language’, prevalence, what dementia is and the stages it typically follows, how to let people affected by it know that your team offer a welcome based on understanding, and how to communicate well. In Part 2 I’ll be looking at the traits that last well into the illness and how these can be harnessed for effective engagement. Plus some other ways your team can make a visit emotionally warm and physically comfortable.
Does language matter?
It’s possible to live well with dementia. A positive approach makes managing dementia easier. You can help by avoiding terms like dementia ‘sufferer’ or ‘victim’. Use ‘living with’ or ‘affected by’ dementia instead.
Neither my grandparents nor Dad ever used the ‘D’ word so we didn’t refer to it with them. For them, it was probably due to fear, stigma, and a lack of understanding. We didn’t want to cause them unnecessary distress. It’s important to be sensitive to the fact that not everyone affected by dementia (patient or loved one) is aware or accepting that they’re living with it. My self-confident grandpa never believed he was living with dementia even when it was advanced. Meanwhile, my self-deprecating grandma realised long before the rest of the family knew how much difficulty she was experiencing.
How common is dementia and who has it?
Dementia affects about 850,000 people in UK. This number is expected to double over the next 30 years.[1] One reason is an older demographic. However, it’s not part of the natural ageing process and some people are diagnosed young. In the UK it affects over 40,000 people under the age of 65.
When you first meet someone, you won’t necessarily know their diagnosis nor would you ask them. Having a basic understanding of dementia will give you the confidence to treat them appropriately and to adapt to their individual needs.
What is dementia?
The NHS website defines dementia as “a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning.” The main cause is damage to brain cells. Many different reasons for this damage have been identified and research is ongoing. The list includes contracting certain diseases, brain injury, exposure to toxins, and in some cases, an inherited propensity. In view of my family history, I wonder what my chances are.
There are over 200 types of dementia. Alzheimer’s Disease (AD) is the most common. Vascular dementia, which is caused by problems with the blood supply to the brain, is the second most common. Dad had Mixed dementia which can be any combination of types but is usually AD and Vascular. Dementia with Lewy Bodies (DLB), which can be associated with Parkinson’s Disease, is another type.
The symptoms, speed of change, and type of support needed vary a lot. They’re likely to depend on which parts of the brain are affected, the person’s physical health, their attitude to diagnosis, their surroundings, the support they receive, plus the stage of dementia reached.
What are the stages of dementia?
Stage 1
The mild, first stage can include problems with memory such as losing things, speed of thought, language such as word recall, visual perception like using the stairs (often common in AD and DLB), and changeable/low mood.
You’re most likely to encounter casual visitors and colleagues who’re affected at this early stage when the symptoms may not be obvious and are more easily concealed. If the person is starting to realise that they aren’t performing as they once did, they may be frustrated, embarrassed, worried, or scared, and this could be reflected in their emotional reactions. They may start to lose self-confidence but possibly hide or deny this. Be reassuring without being patronising. They’ll be no less capable in many areas (value this and let them know that) and will naturally be offended if you suggest otherwise.
Stage 2
Memory problems might now include difficulty recognising people or repeating a question again and again. Decision-making can be more challenging. There may be difficulties with orientation by time or location, and with managing emotions. Behaviour may start to change. For example, restlessness, vocalisations, or repetitive actions. Physical difficulties such as with walking and balance, are other common signs. This isn’t an inclusive list nor does everyone experience them.
People living with dementia at this stage are likely to be being supported at home and may still be getting out and about. This could include visiting your site independently or coming with/to support groups. Heritage sites are ideal for people to gain support through sharing. This includes carers who may need to recoup and socialise with or without the person they care for. You’ll want to consider these different needs if you decide to offer much-needed support for carers. If you choose to host dementia group sessions, I suggest that you start by working with a local dementia organisation.
Stage 3
By this stage, the mental and physical symptoms of all types of dementia are similar and will have a severe impact on a person’s life. Unless your site does outreach work, your team are unlikely to interact with people living with stage 3 dementia. However, you may provide resources such as loan boxes facilitated by people’s carers. Liaise with carers to find out what’ll suit recipients best.
How do we show that people affected by dementia will enjoy being here?
As you’ll appreciate from the description of common symptoms, it’s very easy for people affected by dementia to stop engaging with heritage sites. Anxiety about not being able to interact with an environment or strangers as they once did, can lead to loneliness and depression. Family members can also feel awkward about being out in public with a loved one who may be noticeably different and finding things difficult.
One of the best ways to show that your team won’t be fazed by this is to indicate that they’ve had training. This could be a badge or a declaration on your publicity material. The Alzheimer’s Society runs a scheme whereby people can become Dementia Friends and wear forget-me-not pin badges to show this. I’ve done this training and it’s a great way to start. It would be worth contacting someone like me who can offer a course on dementia aimed specifically at heritage teams.
You could use the term ‘dementia-friendly’ but be careful not to label places or activities in a way that makes people who don’t identify with it, feel excluded. After all, many adjustments will improve the visiting experience for lots of other people not affected by dementia. The exception would be if you’re holding an event just aimed at people living with it.
Once people know that there’ll be a supportive welcome, they’re more likely to get in touch or just arrive. This is where some tips on communication might help.
How best to communicate effectively?
We don’t all receive and communicate information best in the same way. If one method doesn’t seem to be working for a person, suggest trying another such as writing rather than just speaking.
Additional sensory input like background noise or a ‘busy’ environment can also hinder mental processing. If you’re talking to someone on the telephone, move somewhere quieter, if appropriate suggest that you give them time to take notes, offer to send information in different formats and to confirm the content of the conversation in writing. If you’re talking face-to-face, make sure you’re well-lit without reflections or a distracting background, and offer to give the person a reminder to take away.
With any conversation, try not to ask multiple questions or make multiple points in one go. Pause to give processing time. Calmly repeat as necessary. If you detect that your accent or vocabulary are causing difficulties, you can provide more clarity by slowing down and rephrasing. Be aware though that every time you say something in a different way, the recipient has to re-process the input. This requires time, effort, and can cause more confusion especially if it’s coming at them fast!
Use positive body language and facial expressions. These are understood until well into the illness and are also detected aurally. Try to hide tension if you’re aware that other people are waiting and perhaps starting to show impatience. The person you’re helping will pick this up. They’ll feel uncomfortable and under pressure which could slow down your interaction. Have strategies in place such as calling a team member to assist with other people.
There’ll be times when it’ll help to keep someone safe or to avoid embarrassment if you tactfully point out something they’ve missed or made a mistake about. However, it's unhelpful to say, even in a cheerful way, that they’ve been repetitious or “must” know/remember something. Only remind if it’s really necessary. Offer to help rather than do a task for them, tackling it together in stages if necessary. For example, going through a room booking procedure at their pace.
Be warm and friendly with people who may be nervous and feel vulnerable. I recommend having a staff policy for dealing with adults who become distressed or lost. Often we only plan for that happening to children.
What helpful changes can we make to the environment and activities we offer?
In Part 2 (https://www.jogillam.com/post/dementia-my-family-enjoying-our-heritage-part-2-of-2), I’ll be sharing some of my personal and professional insights into what people affected by dementia want when they visit a heritage site. Many of these needs are relatively easy to meet with a little thought and planning. Please don’t hesitate to contact me if you’d like some help. Go to https://www.jogillam.com/
[1] The Kings Fund