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The purpose of outings is to leave the home and go somewhere to see, hear, smell, taste or do something different. A change of environment activates different brain areas than those used in our home routines, and stimulates different thoughts.
Some people with dementia are reluctant to leave home, their place of safety. Some want to know that they are with someone they can trust to keep them safe when they are out. If the person with dementia is reluctant to go out, try to figure out why. What are they worried about when they go out? Is it something that might happen to them while they are out? Or are they worried about what will happen to the home while they are away? If you can figure out what it is, then you can try to address their concerns.
Agoraphobia is a mental health disorder where the person has a fear of being in an inescapable situation or where help would be unavailable and is often associated with a fear of leaving home. Agoraphobia is rare, occurring in less than 1 per cent of older adults. If the person you are caring for has agoraphobia, then it would be extremely difficult for you to persuade them to go out for recreational reasons. Psychological therapies tend to be successful in treating agoraphobia, so if you suspect that the person has agoraphobia or another mental health disorder, seek diagnosis and treatment.
After developing dementia, the lives of people with dementia and their carers change significantly. Their relationship changes significantly too, as one person becomes much more dependent on the other both around the house and in life more generally. The dependent person loses control and power in the relationship. Spouse carers say that sometimes it is important to feel normal and be a ‘couple’ again. Family carers say how important it is to sometimes just spend time with their relative with dementia without being specifically in the caring role. Outings provide an opportunity for the person with dementia and their carer to interact in a more normal and equal way.
Here are some suggestions for short outings around your local area. You may be able to do these every day by walking and driving:
Longer outings give us something to look forward to, a reason to get dressed in our good clothing and something interesting to talk about later. Longer outings often take a little more organization, and you might be able to do these once a week or once every few weeks. Here are suggestions for longer outings:
If you’re planning a longer outing, try to avoid situations where there will be a lot of noise and/or crowds, because people with dementia find it difficult to concentrate in these situations and can feel stressed. If you want to go to a concert, a short intimate lunchtime concert may be better for the person with dementia than a long evening concert with a big audience. If you are going to a concert, if possible sit near the front on the side so you can leave early if necessary, and so that the person with dementia doesn’t have to spend energy filtering out the rest of the crowd in front of them and can concentrate on the show. Similarly, avoid going to galleries, museums and markets when they are crowded such as in the middle of the day on weekends. Before you go to a gallery or museum, plan the exhibits you want to see and don’t make the visit too long.
If you do go on a longer, bigger outing, take photographs so that you can talk about what you’ve done afterwards. You can plug the memory card from your digital camera directly into a digital photo frame to help the person with dementia experience the pleasure of the outing again.
During outings, conversations tend to be in the moment. Help the person with dementia observe their surroundings and talk about the people and things around them that they can see, hear, feel and smell. Give the person time to look around them and reflect on what they see and hear. The outing could bring up old memories that the person with dementia wants to reminisce about.
There are services that provide opportunities for people with dementia and their carers to have social or cultural experiences in dementia-friendly environments. Your local Alzheimer’s association is a good place to start finding out what services are available in your local area (see also ‘Further resources’). Here are some services that I have heard wonderful stories about:
These cafés are organized gatherings where people with dementia and their family carers can ‘drop in’ and enjoy time together with some refreshments and entertainment. The environment is supportive, as all the people who attend are in a similar situation, and there are professional staff available who coordinate activities and provide information and advice.
These provide opportunities for people with dementia and their family carer to go out for a social occasion. The restaurants often offer a three-course meal in an environment that is not too noisy and with supportive staff. The dinner and dances offer a meal and organized free dancing with music from the appropriate era.
Art gallery tours were conceptualized and started by the ARTZ organization in the United States. The program was then piloted in Australia at the National Gallery of Australia. Evaluation found that people with dementia enjoyed and were engaged in the program, and talked and participated much more than their carers expected. Family carers also enjoyed the program. There were no measurable improvements in mood, behaviour or quality of life of the people with dementia overall, but the evaluation team still believed that the program had value and the benefits were encapsulated in the comment by one participant: ‘You do it for the moment.’
Given its success, the art gallery and museum program has been made available in several urban and regional art galleries around Australia (ask your institution if they run a program for people with dementia). The program involves selecting artworks that would be interesting and engaging for people with dementia and training museum educators on leading tours for people with dementia. The tours are usually open to people with dementia living at home or in nursing homes, and their carers.
There is good evidence that many people with dementia enjoy participating in a choir and are very proud to perform to an audience! There is also some evidence that participating in choirs improves the mood and wellbeing of people with dementia. Family carers are usually welcome to also participate in these choirs and some nursing homes have facility choirs. I have also seen bell choirs for people with dementia, where instead of singing, each person rings one or two bells under the direction of a conductor.
The Australian Men’s Shed Association is a community-based organization that provides an opportunity for men, including those with dementia, to have a ‘male’ space in which to spend time and complete meaningful projects and activities. There may be organized projects to which the men contribute such as simple assembly, sanding or painting. There are also tools to be cleaned and sorted and stored. The concept has now spread to New Zealand, Ireland and the United Kingdom.
The following programs show how activities can be modified for groups of people with dementia to enjoy. Check ‘Further resources’ for details on how to access programs in your area (note that, at the time of writing, these programs have not yet reached Australia but they may give you some inspiration).
In the United Kingdom there are occasionally concerts by choirs and orchestras specifically for people with dementia and their carers. The time of day, setting and program are created to be more suitable for people with dementia.
ARTZ in the United States run a program called ‘Meet me at the movies’ where key scenes from old movies are shown in a cinema, followed by discussion and reminiscence. The clips are selected based on interviews with people with dementia to be resonant with them, and trained staff support the participants through the activity. This concept has been adopted by professional care staff who put on a ‘movie day’, and family carers could also do this at home. It would also be a nice idea for an intergenerational activity.
There are UK companies that specialize in holidays for people with dementia and their families (as far as I know there are none in Australia but you might like to investigate whether anyone offers this service in other countries). These companies offer accommodation, or guided tours and activities, with increased practical help and a supportive social environment as part of the service.
There are logistical considerations that you need to plan so that any outing can proceed as smoothly as possible. For instance, you don’t want to have the person with dementia hungry and grumpy and not knowing where to get food, or needing to use the toilet and not knowing where the nearest facilities are. Some things to consider include:
Gary and June decide to try to take Brian out for a drive to see the neighbourhood where he grew up. They discuss the outing in detail as he has not left the nursing home for over a year. They decide they can manage an outing where he stays in the car, and they pack food in case he is hungry. They wait for a day where he is not grumpy and is relatively agreeable. To introduce the idea of the outing they show him some photos of himself at his old home.
Brian is uncharacteristically cooperative in going to the toilet, having his shoes put on and getting into the car. June chats to him about the weather and things around them. Brian doesn’t talk but he seems to be listening and nods. Brian looks around during the drive and seems particularly interested when they drive past paddocks with sheep in them. Gary and June decide to pull over so that Brian can have a better look at a paddock with several ewes and lambs. Brian tries to open the door, so they cautiously help him out of the car and over to the fence to look at the sheep. He doesn’t stand still to look at the sheep, though; he walks slowly and determinedly along the fence.
‘Uncle Brian,’ says Gary, ‘where are you going? Look, the sheep are here. Look, sheep.’ Gary tries to take Brian’s arm to bring him back to the fence and the car. But Brian shakes him off and keeps going.
‘Uncle Brian, come on,’ he says.
Brian walks round the corner of the fence and keeps going until he comes to a gate. He tries to open this but is unable to figure out the mechanism.
‘Uncle Brian, it’s locked,’ Gary tells him. ‘Come back to the car. We’re going to see your old house.’
Brian keeps shaking the gate to try to open it and won’t be dissuaded. Gary and June decide that since Brian is so determined, they will let Brian trespass on the property and they open the gate for him. He makes directly for the sheep; Gary and June follow him, ready to intervene if anything dangerous happens. Brian stops about 4 metres from the sheep. They turn to look at him but don’t move away. Brian then moves slowly towards them.
‘Uncle Brian, what are you doing?’ asks Gary. ‘Uncle Brian, these aren’t our sheep.’ Brian stops.
‘Uncle Brian, we don’t need to look after these sheep. They aren’t our sheep.’ Brian keeps looking at the sheep. He then turns around and starts walking towards the fence.
‘The gate is this way,’ says Gary. Brian lets Gary lead him towards the gate and gets into the car. He falls asleep in the car and they take him back to the nursing home.
Gary and June were happy to see Brian actively involved in his environment during the outing. The nursing-home staff report that he ate well that evening. Once a month from then on, Gary and June took Brian for ‘drives’, which he usually seemed to enjoy. This continued even as his dementia deteriorated, even though it was quite an effort to get him into the car. They stopped when they could no longer get him into the car.
The above example shows Gary and June following Brian’s lead and interest while at the same time trying to keep him safe. It also shows them trying to interpret the intent of his behaviour, and when it was potentially going to be dangerous, intervening in a manner consistent with what they believed his thoughts were (to catch or interact in some way with the sheep). For June and Gary the outings made their visits more worthwhile and meaningful and enjoyable.
Some carers are concerned about how the person with dementia might be perceived or treated when out in public, particularly if they have unusual behaviours. There have been increasing and ongoing awareness campaigns about what the symptoms of dementia are, and how to treat people who may be confused or behaving unusually. Governments and councils are also beginning to create age-friendly and dementia-friendly communities. The hope is that, by increasing awareness, the stigma experienced by persons with dementia and their carers will decrease.
When we do experience stigma of any sort, such as racism or sexism, sometimes we are so shocked or taken aback that we don’t know how to react. We then find ourselves thinking afterwards of all the things we should or could have said or done. It helps carers to think ahead about what we could do or say if someone acts in a critical or derogatory way towards the person with dementia. Would you take the person with dementia out of the situation? Would you try to explain to the critical person that the person has dementia and has a bad memory, or has poor judgment, or has forgotten his social etiquette? Would you just smile and try to not worry about the comments? How about the reaction of the person with dementia—if she is upset about the comments would you downplay them, or say that the other person was being rude? As a carer how would you feel to be with the person with dementia when they don’t behave according to social norms? Try to steel yourself to not be embarrassed no matter how the person with dementia (or other people) behaves; just because they don’t behave according to social norms doesn’t mean the person with dementia has no right to participate in community activities.
My view is that if you think others in your community (friends, neighbours, local shopkeepers) will be receptive you should tell them that the person in question has dementia—importantly, however, this must only be done with the permission of the person with dementia. I would also explain that she is still a person and should be treated with dignity and respect, even if she has a bad memory or behaves in unusual ways. Being open is one way of decreasing stigma in the community. Sharing this information may be the start of a deeper conversation about dementia. I’ve found that many people have some personal experience with a person with dementia and are understanding, sympathetic or empathetic when such a disclosure is made. Some people are also curious and want to ask questions, so be prepared to share a little about your experiences.
Bernie wants to take Joy on holiday. He grapples with this decision, given the importance of routine for people with dementia and the potential that she could find the holiday distressing or difficult. On the other hand, he feels that he’d like a change of scenery and that Joy might enjoy the holiday too. Bernie discusses the possibility of going on holiday with Joy, and she seems keen to go.
After some research, Bernie decides they will go on a cruise from Sydney to Tasmania. He does this to minimize air travel and because it will allow them to have the routine of the same hotel room for the whole trip. He selects a cruise company with a reputation for being good at looking after older travellers. He then contacts the company to see if it is possible to have a little additional support, such as the same table booked for each mealtime, and a state room with big windows that is close to the middle of the ship.
In preparation for the trip, Bernie makes a note of items that Joy seems to use often in their daily routine. He packs many of these for use during their trip. This includes their kitchen calendar, a large bedside clock, her make-up kit and a photograph of them that she has on her bedside table. Bernie decides it is safer to over-pack than not take an important item.
Bernie has many enjoyable discussions with Joy in anticipation of the trip, looking at photographs of the ship, its amenities and state rooms. They do some imagining of how they are going to live in the lap of luxury for seven days. Joy seems excited that they are going on the trip and near the departure date keeps asking how long until they go.
When they arrive at the ship, Bernie unpacks with Joy’s help, hanging up Joy’s clothes and putting out her toiletry items where they are visible on top of the vanity rather than placing them in a drawer. The toilet door is somewhat camouflaged by the panelling, so he gets a piece of paper, writes ‘toilet’ and sticks it on the door. They write Joy’s name and room number on a card, and place both the key and card on a lanyard for Joy to wear around her neck. With Joy’s agreement, they also talk to the ship’s cruise director about Joy’s dementia and ask that if staff find Joy alone, lost or disoriented, to walk her back her to her room and keep her company and page Bernie. Joy says that she is confident she will be fine and that if she gets lost, she will just wait until Bernie comes to find her. For the first few days Joy sticks by Bernie’s side very closely, but as they spend more time on the ship Joy’s confidence grows.
On the first afternoon, Bernie and Joy spend time chatting to another older couple. The next day when they meet this couple again, Joy has forgotten them. This leads to a somewhat awkward conversation where the couple seem to think that Joy is being rude to them. Bernie struggles in deciding whether or not to explain to them that Joy has dementia. He decides to ask Joy’s permission to tell them (without reminding her that they have met previously), with the explanation that they may be nice people to keep company with throughout the cruise. Joy agrees. Bernie then finds the opportunity to tell the other couple about Joy’s memory difficulties while she is in the powder room. Disappointingly, Bernie finds that the couple do not seem to know how to react to his revelation, and are cool and seem to avoid them for the rest of the cruise. Luckily, Joy has forgotten them and doesn’t realize she is being snubbed.
Otherwise the cruise is extremely enjoyable for Joy and Bernie. The cruise director and other staff seem to spend extra time talking with them and making them comfortable. The shorter day excursions they choose to do are well planned, and again staff are very supportive without being intrusive.
When they return home, aided by photos placed around the house, Joy talks enthusiastically about their trip for over a week before seeming to forget about it.
The above example illustrates the planning and thought that went into a successful holiday. It also shows some of the social difficulties that may arise from being in a tour group.
Exercise is good for all of us. It is good for our physical health and mental health.
There is also a growing body of research suggesting that physical activity can improve memory and thinking for people with dementia. To date the studies have been small and not scientifically rigorous, and not all have produced benefits on mental abilities. It is not clear what type of exercise and how much is beneficial, but experts think that exercise with an aerobic component for a total of 150 minutes a week may improve memory and thinking in people with mild to moderate dementia. As most exercise programs studied have been run in groups, the social aspect may also be important. These exercise programs also seem to improve mood and depression in people with dementia.
Exercise does not have to be a chore or separate activity, it can be part of other activities such as transport, housework or recreation. The recommendation for physical activity for older adults is to do at least 30 minutes of moderately intense physical activity on most, preferably all, days. This should incorporate fitness, strength, balance and flexibility. A moderate level of activity noticeably increases your heart rate and breathing rate. You might sweat but you are still able to carry on a conversation. You can talk but you can’t sing.
If you want to plan physical activities for people with dementia, then make them meaningful. If there is a sport the person previously enjoyed, then present a modification of that sport—for instance, golfers might enjoy mini golf or putting towards a target, or walking around a golf course. A netball player might enjoy catching and throwing a ball. Entertainment systems such as Wii offer another way to play ‘sport’.
If the person did not previously play sport then make sure that exercise is fun and interactive. Many cognitively intact adults do not do physical activity even though it is good for them, so it is very unlikely that a person with dementia will do exercise just because it is good for them.
Here are some ideas for physical activities that can be made social or fun: