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Alzheimer´s disease - practical tips for informal carers

As our society ages the topic of healthy ageing is prominent. From advice on healthy diet, regular exercise, solid social interactions, building of networks oriented to medical, computer based assistance in remote rural areas - the list is endless. The lack of solutions for particular situations we or our relatives might end up in as we age is equally endless e.g. lack of mental health support, palliative care, social assistance services, carers´ rights among many others.

Alzheimer´s disease is a neurodegenerative brain disease characterized by progressive cognitive decline leading to the need for complete care. According to Alzheimer Europe it is estimated that 9,8 million people in Europe (2019) alone already live with Alzheimer’s disease with a projection of the number increasing to 14 million by 2030. Most patients remain in a home care, the main carer being their spouse, child or other relative. Not all European countries provide specialized carer training as you can see in the table in European Dementia Monitor 2020.

Therefore, if you are a carer it is of great help to look up for guidance offered by expert organisations on internet or read relevant books on the topic. One of the most important things to have in mind and in place is the support in this role whether it is psychological or other well-being formal or informal support. This is necessary in order to be able to process feelings of helplessness, guilt, sadness, anger that are common and normal. This support network will help you also to reach the decision to transfer the responsibility of caring in case of your own illness, exhaustion or other circumstances no more compatible with the health state of Alzheimer´s patient.

I would like to cover a few tips that may help you to communicate better with your Alzheimer´s relative and create a loving relationship despite the many setbacks this illness brings into play.

  1. If you do activities and brain exercises with your loved one do them in moderation. They should stimulate and not be a heavy drill. Remember the time you cared for a child, every activity was a discovery, fun to do. Keep this perspective.

  2. You can activate the person with small tasks according to their abilities. They may confuse things or do them in a wrong way. Do not correct and explain lengthily how it should be done. The result is not important, doing is what counts.

  3. Do not argue, for example if they tell you they have not eaten for days or that nobody came to see them. Offer them some snack if it is still not time for a meal, tell them that you are now there to keep them company. The chances are that as the illness develops the appetite may reduce (due to depression or loss of sensitivity in the taste buds). If that is the case make sure they eat regularly and are checked by the doctor for nutrients income and weigh balance.

  4. Do not cross check with questions: Do you remember when we were there together? Do you recognize uncle Tom? - just name situations and people.

  5. As the illness progresses, the words are losing meaning for the person. Not only they do not recover the right words, they also name things randomly so their message is often not understandable. This is obviously hard but again recall the small child, what helps to understand them? Holding a hand, asking to show things or lead you to a place, pointing at things, bringing several things to choose from, if upset giving hugs.

  6. Contain your own urgency to speak and explain. We may feel obliged to fill in the void when words are lost but our presence is in the physical presence as much as the mental. The fact that we are there with the patient, drinking coffee or tea is often enough.

  7. If the person is comfortable with animals and they do not have a pet, bring them to a place with animals - cat cafe, animal farm, simply walk through a village nearby where are hens in yards.

  8. Walk with the person regularly, moving is important for muscle maintenance but also brain health and immunity. Green areas are the best.

  9. Alzheimer´ s patients often lose sense of smell, taste, the damage of the brain impacts its ability to interpret images. Sensory stimulation is of a great help. If you know what the person liked before the onset of Alzheimer´s you can effectively use it in order to evoke positive memories and feelings. For example, if they liked baking - you can use containers of vanilla powder, cinnamon, nutmeg to smell it, put a flour into a bowl and let the person play with it. If the person used to do handiwork, let them play with wooden not sharp things or paint pebbles. If they liked a water element, bring them close to water or install a little fountain so they can listen to the trickling of water. Play them music they used to listen to. Offer them a gentle massage. Sensory stimulation can help you relate to each other and enjoy quality time together.

Alzheimer´s disease currently does not have any cure. There is still inadequate understanding of the complex pathophysiology of Alzheimer´s disease, which may necessitate combination of treatments. Informal carers play a crucial role in accompanying Alzheimer´s patients and yet many countries lack a proper trainings, financial support, payed leaves in order to make the life of carers a little bit easier. If you are a carer, take care, do not do this alone. Maybe your loved one will not tell you "Thank you" but you know you deserve it.


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