PODCAST / CARE STRATEGIES Hello everyone! Today, we want to talk to you a little bit about maintaining the autonomy of the person with dementia Autonomy is the capacity for self-determination and a freedom of choice; essential requisites for independence and control over one's life. People with dementia should be encouraged to maintain the autonomy in activities they enjoy and continue to be active. It is important to support people with dementia to keep them safe, to adapt the environment to their needs and to promote their independence. The role of the relative is to help the person with dementia to start different activities that they participate in and can plan certain tasks that help appropriately to fill in and structure the days. We can include the person with dementia in everyday activities, such as cleaning, cooking and taking care of their own personal hygiene. All tasks should take place in previously established order and in the environment that they know. Let it be appropriate for individuals cognitive and physical capabilities. When designing the activities don't think about what the person cannot do, try and focus on what they can still do. Often the people with dementia may start tasks that they haven't been doing before. We should accept such activities and let them participate in such activities. It is important that the person gets acquainted with something and remains active for a longer time. Effective activities for the person can easily be found through trial and error. What is most important is that the person has something to do in order for them to remain active for longer. The final result is not important, what matters is participation and satisfaction. When due to the progression of the disease the capabilities fall, we can give them less difficult tasks or only parts of the tasks. Activities of daily living refer to activities that people carry out every day as part of their established daily routines. There are two broad categories according to their purposes, the first is Basic activities of daily living, while the second is Instrumental activities of daily living. Both basic and instrumental activities of daily living can be incorporated into activity-focused dementia care with many positive benefits. Daily routines can be helpful for both - the caregiver - and the person living with Alzheimer's. A planned day allows you to spend less time trying to figure out what to do, and more time on activities that provide meaning and enjoyment. Examples of basic every day activities include combing one's hair, shaving, and brushing one's teeth. So if a comb is placed in the hand of a woman with severe dementia, it may automatically cause the act of combing her hair, because it is such a habitual action. Another example is dressing. How we dress expresses a lot about who we are as individuals and what we do in our lives. It is important that people with dementia are allowed to participate in dressing themselves to the fullest extent possible. It is also important that what they wear reflects their personal preferences and, if possible, unique identities. Instrumental activities of daily living, are directed outward toward our living environments. IADLs include caring for our homes and other people. Examples include preparing food, washing dishes, raking leaves, sweeping the floor, and keeping track of money. People with dementia can often still participate in activities like these, because such activities are very familiar and use repetitive, over-learned patterns of movement. Even if a woman with dementia can no longer plan a meal or assemble ingredients to cook, she might still be able to stir ingredients or peel potatoes using automatic patterns of movement. A man who can no longer manage his money may still enjoy sorting change. Including people in chores like raking leaves, sweeping the floor, wiping the table, doing the dishes, or folding and sorting cloths may be enjoyable and also provide a sense of usefulness. These repetitive activities provide an opportunity for those with dementia to feel productive and useful. Example of allocating activities preparing lunch: - choose the menu - buy in the store - packing up the bought groceries, - cleaning and cutting ingredients - placing the groceries in the cooking pans - steering dishes - preparing plates, cutlery and napkins, - taking the food to the table. - lunch - tidying up the table - doing the dishes - wiping out the dishes and cutlery - rest. Structuring the daily activities A person with dementia will eventually need carers assistance to organize the day. Structured and pleasant activities can often reduce agitation and improve mood. Planning activities for a person with dementia works best when you continually explore, experiment and adjust. Taking on the task of being responsible for activities of somebody else can be both physically and emotionally draining. Plan and take part in activities that you yourself enjoy as well. More that you will be satisfied yourself the better will be for everyone. People with dementia need organisation and structure. Before making a plan, consider: * The person's likes, dislikes, strengths, abilities and interests * How the person used to structure his or her day * What times of day the person functions the best * Ample time for meals, bathing and dressing * Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues) * Make sure to allow for flexibility within your daily routine for spontaneous activities. As dementia progresses, the abilities of a person with dementia will change. With creativity, flexibility and problem solving, you'll be able to adapt your daily routine to support these changes. Checklist of daily activities to consider: * Household chores: help in the kitchen, washing dishes, vacuuming, sweeping the floor, cleaning dust doing laundry, cleaning the bathroom, taking out the trash or bringing mail. * Mealtimes: help in buying groceries, preparing meals or baking. * Personal care - bathing, showering, personal hygiene, dressing, eating, brushing teeth, cleaning nails and brushing hair. * Creative activities - music, art, crafts * Spontaneous, like visiting friends * Intellectual - reading, puzzles * Physical - doing sports, passing the ball, bowling or fishing, everything that the person liked to do before the disease. * Social and family activities - walking and hanging out with family and friends, participating in various s family events. * Memory activities - photo albums, movies, memory cards, cross-puzzles, ... * Spiritual or religious activities - participating in mass, listening to a preacher etc. * Rest - rest after lunch, sitting and relaxing, listening to music. Writing a plan When thinking about how to organize the day, consider: * Which activities work best? Which don't? Why? (Keep in mind that the success of an activity can vary from day-to-day.) * Are there times when there is too much going on or too little to do? * Were spontaneous activities enjoyable or did they create anxiety and confusion? * Don't be concerned about filling every minute with an activity. The person with dementia needs a balance of activity and rest, and may need more frequent breaks and varied tasks. Daily plan example (for early- to middle-stages of the disease) Morning * Wash, brush teeth, get dressed * Prepare and eat breakfast * Have a conversation over coffee * Discuss the newspaper, try a craft project, reminisce about old photos * Take a break, have some quiet time * Do some chores together * Take a walk, play an active game Afternoon * Prepare and eat lunch, read mail, wash dishes * Listen to music, do crossword puzzles, watch TV * Do some gardening, take a walk, visit a friend * Take a short break or nap Evening * Prepare and eat dinner, clean up the kitchen * Reminisce over coffee and dessert * Play cards, watch a movie, give a massage * Take a bath, get ready for bed, read a book ​ Home safety is important for everyone, but this is especially true if you're caring for someone with dementia. A throw rug or a stray toy on the steps could easily cause a fall or injury. People with dementia often forget to eat and drink and can become dehydrated as a result. Home must be prepared for living with the person with dementia in a way that is safe especially in the advanced stages of disease, where problems with balance, coordination and spatial judgment may occur. This can help at prevent injuries, it is important to help to reduce the potential danger in the environment and discreetly calm the well-being of a person with dementia. Changes in the adjustment of the environment should not be radical, as this can cause confusion so that the person may want to go home while they are already home. Balance between the independence, privacy, and safety is necessary to be established. Remember, paying attention to home safety can help the person with dementia maintain his or her independence - and ease the stress of caregiving. Make sure that safety in the environment is established: * Watch for the risk of choking * Look for ways how to increase safety in home that the person with dementia does not wander away from home, turn on the stove and forget to turn it off, etc. * Look for ways how to prevent falls and improve bathroom safety To reduce the confusion of people with dementia: * Have familiar objects and people around. Family photo albums can be useful. * Keep always lights on. * Use reminders, notes, lists of routine tasks or directions for daily activities * Stick to a simple activity schedule * Talk about current events Being home alone at a certain point in time will not be safe anymore. This moment may come with the person at a different time. This is why we must be the ones that evaluate when it is important to take appropriate measures. For the relatives of the person with dementia it's important to understand, that the person with dementia often does not understand why he or she is not supposed to live alone. It stands up to any idea that anyone should watch over her or declines going into daily center. In such case, we must remain to have enough caution that the person with dementia still keeps their own autonomy. It's important to know what words to choose. We avoid any works that would say that ˝somebody must take care of you˝, ˝you can't stay at home alone˝ and ˝you can't take care of yourself˝. Rather we try to distract them or motivate them for something else. We hope that the chapter has been useful to you, and also hoping that these tips can help you cope and get the support you need. If you are interested in obtaining more information, you can consult our project website at: http://demcare.hcilab.es/ . Until the next episode!